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The Differences With MS After The Ten Year Mark

A month or so back, I noticed a couple interactions in the comments section of one of my articles that got me thinking. The interaction, nearly argument, was between someone who was recently diagnosed (let’s say under five years) and someone who has lived with the disease for considerably longer. The more recently diagnosed person was very spry, full of positivity and the “MS doesn’t have me” spirit. The more veteran of the two took offense and offered the “well, just wait a few more years” type of comment. It all got me thinking about the difference between the early part of my disease and now.

Now, as I feel we always have to keep stressing, we’re all different with this disease. Everyone’s journey with Multiple Sclerosis is unique. Symptoms, effective treatments, and severity of disability are just some of the aspects that vary person to person. That said, there is still a lot that can be similar between us too. One of those things I’ve noticed and experienced is a change that happens once you’ve had the disease for a long time (once more, this is not everyone, but still many people). It seems like once you’ve had this disease for a long time, it starts to add up. You start to see things differently. I think that’s one reason that people who’ve had the disease for a while often prefer my writing, rather than the more newly diagnosed who probably think I need to “be more positive”.

My experience

For my first 10-13 years with the disease, I was like most. I’d have exacerbations, they’d end (the words “relapse” and “recover” are so the wrong words for that cycle), and then I would get back to life. Normally I’d be back to the way I was or close to it. At least it would seem that way. Now, no matter what I was able to do when the exacerbation ended, I realize that damage was still done (and that that damage would plague me later in life). Those early years, I really thought, “OK, I can handle this, it’s a vicious cycle, but I can deal with it”. I was still able to work, and have a mostly normal life between exacerbations. I even ran marathons and still played hockey in those first ten years (never as well as I had before, but I could still take part). Even though I’d seen what MS can do, because my grandfather had it and was completely disabled from it, I figured that this was the future, I take medication and he didn’t, so I’ll be in a different situation.

I went through a number of disease modifying therapies before finding one that worked well. However, after that, I had some insurance issues when I switched jobs. I was suddenly no longer able to get my medication, so I decided that since I was relatively healthy and felt great, I could go without it. So I did, for a while. I felt fantastic too, even ended up in the best shape I’d been in since before my diagnosis. However, I was foolish. I’ve since learned the hard way that feeling good doesn’t mean the disease isn’t active. Eventually, life came crashing down and I had a massive exacerbation. The disease is still working in the background, no matter how you feel and look on the outside.

While going without a disease modifying therapy certainly contributed to where I am now, many people who have an average course of MS still tend to have a lot of problems after that 10-13 year mark, regardless of their treatment. I base that on the many people with MS that I talk to on a daily basis, which is significant (writing for a major website like MultipleSclerosis.net has allowed me to meet and speak with a lot of people who suffer from this disease, and I’m so thankful for that. I don’t say it enough, but I’m so very lucky that people will read what I’ve written). Again, we are all different, and that won’t be everyone, it’s just a majority of people I talk to.

Why?

Why is this the case? Well, exacerbations add up. That’s one reason I hate the term Relapsing-Remitting. When you have an exacerbation or “relapse” as so many like to call it, that myelin sheath around some of your nerves is getting attacked and eaten away. You can’t bring that back. The problem area may not always bother you, but damage is done. Eventually, after years of these incidents, you’ve got a lot of damaged areas. Once you have enough damage, you start having issues without having an exacerbation. All of the triggers we experience, like temperature and stress, begin to make life even worse than they did before because there are so many damaged areas getting affected at once.

A reminder

So why talk about all this? Well, I want people on both sides to realize that there can be a huge difference between those are relatively newly diagnosed and those who have battled the disease for many years. Veterans like me need to not be so upset when we see and hear those who haven’t gotten there yet be so positive and active. That can be pretty hard. The more recently diagnosed also need to realize that because MS isn’t a big problem for you yet, that doesn’t mean it won’t be.

Thanks for reading!

Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Windy9999
    3 weeks ago

    Late August 2019, I was looking at my health record with my neuro and found what looked like they had diagnosed me with MS and ataxia. I went to them in 2015 and got tested but they told me I just had neuropathy because I had no knee reflexes which are usually the opposite with MS. I had never heard of ataxia and had to look it up. So, I started to research all the things I have had in the past as it pertains to MS and realized I have had it for 50 years. My first sign was double vision when I was in Jr. HS. I am 65 now. My first flare up was 44 years ago after my son’s birth. I could not walk without help until he was 10 days old. I had a very long and hard labor with him and my doctor had me walking the halls all that time. I now know that walking too much brings on a flare up. When he was 10 days old, I woke up without any pain or weakness in my legs. That has happened so many times in the last 10 years I know that was an MS flare-up. Ten years ago, I started developing all the classic symptoms of Secondary Progressive MS and now I can barely walk and spend most of my day in a power chair. So, my first 50 years I had no idea I even had MS. Ten years ago, I suspected I did, but it took 6 years to find a doctor that would actually listen to me, even though she thought it was just diabetic neuropathy. Forty years ago when I was in my mid 20’s, I had an EEG done and I was told I showed a tendency for epilepsy. In my research I found out that MS can cause epilepsy. The only seizures I have are muscle twitches. I also have been having auditory hallucinations which can be caused by epilepsy. I guess I am fortunate not to have a lot of issues in the first 40 years, but it is making up for it now.
    I haven’t talked to my neuro since I found it. My next appointment is in early December. That will be a long conversation with lots of questions, the first being why didn’t they tell me. The only thing they did was change the muscle relaxer I take to one for MS. Of course he didn’t tell me why, just that it works better. The one he gave me is one they give for MS. I’m not sure which upsets me most; that I have MS or the fact that they didn’t tell me.
    So, did my journey begin 50 years ago, when I was diagnosed, or when I found out about it? On top of all this, when I was about 8 years old, I fell off a horse and hurt my back. I have had back pain since that day and developed degenerative disk disease which has now become lumbar radiculopathy, which is why my right foot is numb. My left foot is numb from the MS. I’ve never had good balance, which is why I fell off the horse. I tried to roller skate when I was little but never did get the balance needed. In HS I could not balance on the balance beams. They were only inches off the floor, but I could not stay on them. Now I know why. In fact I know why to a lot of things in my life, especially why I fall all the time. I have a name for it now.

  • Devin Garlit moderator author
    3 weeks ago

    Thank you @Windy9999! It’s very common for folks, myself included, to look back into our past and realize that we likely had this illness for a lot longer than was originally thought. I’d say it’s pretty common for multiple conditions to strike one person a lot as well (with them playing off of eat other). I hope your appointment in December goes well and you get some of the answers you are looking for!

  • Ann Dolan
    4 weeks ago

    I feel like I just read my biography!
    Diagnosed 39 years ago my MS has run a similar course. After the initial “woe is me” phase I embraced the “I have MS, MS doesn’t have me philosophy” and persevered raising kids, working full time, getting on with my life. A few relapses and flares each year, no problem. After my initial diagnosis I prayed to be able to see my kids graduate high school. At their high school graduations I renegotiated, praying for college graduations. Fast forward through college graduations, marriages, precious grandchildren and I am still negotiating. I retired two years ago expecting that this course would continue. As usual MS is what happens when you have made other plans. I had not anticipated that aging would lessen my ability to recover from relapses, or that relapses would start to blend together so that managing my health has become my new occupation. As a retired nurse some days I feel like I’ve got this handled. Other days not so much. Looking back I realize I spent too much time over achieving, proving to myself and the world that I am strong. Now I realize that family and friends are so used to me being large and in charge that they don’t cope well with my limitations. I’m tired. All the time. Too tired to run their errands, attend many social events, babysit for hours etc. Make no mistake, I would love to do all those things and more. However now my first priority each day is me. Making sure I have enough energy and stamina to do simple chores, doing mental reviews of my health status … you all know the drill. I have found new pastimes that require less physical effort. I’ve said a mental “bye bye Felicia” to the people who can’t accept my limitations. My negotiations and prayers have changed to “please help me enjoy this day, please let me be able to snuggle this one last grandchild, please let me continue to find joy in each day.” “Please guide me in forgiving the people who tell me I don’t look sick one day and ask why I look so awful the next day.”
    “Please allow me to keep stretching my mental and physical muscles as
    “Blessed are the flexible, they shall not be bent out of shape””.

  • Devin Garlit moderator author
    4 weeks ago

    Thanks so much for sharing that @Ann Dolan, I most definitely see a lot of myself in your story as well!

  • kstas4
    4 weeks ago

    Thank you for this article. I agree completely with the notion of us veterans not bouncing back from the exacerbations as we used to. I was diagnosed 11 1/2 years ago. As of today, the horrible stress of my full time+ salaried job has me now using the short term disability insurance that I am so thankfully glad I signed up for.
    At this time, it’s unsure whether I’ll work again.
    I’m a type A personality. Work at work, work at home. Having raised 4 incredible children, I am grateful they are now 19 yrs old and older.
    I do have a suggestion. Or maybe it’s a question. I’m not sure.
    But it would be so beneficial for insurance companies to read these types of articles so they are further educated on this disease rather than solely base approval for disability on the clinical findings.
    I guess that was the suggestion and here’s my question.
    Are the insurance company case managers and physicians mandated to read more into this disease? Are these articles provided to them so they better understand our disease?
    If not, can this be arranged as we all know, there’s a lot more to this illness than clinical findings.
    I hope to hear back on the above.
    Thank you

  • Devin Garlit moderator author
    4 weeks ago

    Thanks for the great comment @kstas4. While I don’t know for sure, I certainly get the feeling that those involved with insurance companies, as well as government disability, don’t really take in real stories from patients. It would be nice if they did though. Not only them, but doctors as well, because there are still many that don’t fully understand what life with the disease is truly like.

  • asapcynthia
    2 months ago

    I’m reading this in ’19, and it was written in ’17, so I probably replied already, but I was motivated by your experience as an adult woman. My story in a nutshell, dx in 94, but I can trace my first symptom to ten years earlier. My first exacerbation in ’94 felt like I was hit by a Mac truck. It went right to my legs. I had little kids, a job, and and no time for this, but MS had other plans. Firstly, like most people think, PT/exercise was my savior. Once I came around, I felt really good and I was in the best shape of my of life and felt like if I stayed on top it it could be managed. Like if I kept my self in great shape, ms could take what it wanted because I had a lot to work with. Silly girl.
    So now, retired and reflecting, really all I want is to be able to hold a grandchild, should I get blessed to have any. I know I will I never rise to the level of my parents, and the assistance they gave me, propping me up in the bad times, celebrating the good, and giving my kids stability when I had none to offer. Fast forward, now my dad passed two Years ago, and I offered my mom a place stay while she declined from dementia.
    So I returned the favor as best as I could. She’s requires a level of care I can’t provide. But that’s OK. I gave what I had when she needed it. But now, I turned sixty. Ugh. The beauty of it all is I got to see my fears realized. I saw how MS would affect my life. What it would take from me, and that’s OK. I am much more ‘zen’ about it. With acceptance comes peace, and the struggle you fought when you were young, well you sort of lay down your arms, suck it up, and grab your cane or walker and move however slowly forward. But that part about the ability whether or not I will able to hold a grandchild is where I am now. And should it come that I have to opportunity, I’ll get one of those slings and sit in a wheelchair if that’s what it takes. Thrive or die, I guess. And you don’t need The whole loaf of bread to make a sandwich.I take what I get, roll with punches, adapt as best I can, and be grateful for what’s left.

  • Devin Garlit moderator author
    2 months ago

    Thanks so much for sharing @asapcynthia, it is always very appreciated!

  • timpko
    2 months ago

    I have had MS for 39 years, diagnosed for 26 years. In the 1990s I had many relapses, culminating in a wretched and particularly long one in 1999-2000 that involved some cognitive damage.

    Yet I count myself as very lucky. I began taking Copaxone in 1999 and, although it didn’t prevent that 1999-2000 relapse, it’s prevented relapses since, except for one in 2013, which was a very stressful year due to other issues.

    I walk with a cane outside the house, but rarely inside. Unfortunately, I have other chronic incurable diseases, which makes life interesting. I’ve had many surgeries due to other conditions. So basically my life revolves around managing my many diseases and conditions. My joke is managing the medical issue du jour.

    My attitude has changed since being diagnosed with MS. I am more positive now than I was initially, but I am also more accepting probably because I’m older and have had MS for a long time but mostly because I’ve had major illnesses since childhood. I inherited a lot of problematical genes as far as health is concerned. But I am a survivor.

    Although frequent sickness does depress me from time to time, I focus on doing what I can to get rid of it or make it better. I NEVER give up.

    Yet I realize I’ve been very lucky. MS has caused relatively few disabilities.

    I also am cognizant of the fact that when I developed chronic diseases, like MS, fate gave me a job no
    matter whether I wanted it: managing the diseases for the rest of my life. I either accept the job and try to do it well, or I don’t accept it and perform poorly. My choice.

    I don’t always perform my job well for all my diseases and am forced to pay the price. But I know the rules, and I have no one else to blame but myself. So I try the best I can most of the time. So now I focus on how much better I can do my job.

  • Devin Garlit moderator author
    2 months ago

    Thanks so much for sharing some of your story @timpko. I love the way that you use the word “acceptance”, that is exactly how I look at it. I accept that I have these issues and must deal with them. That isn’t necessarily a negative thing, which I think is something that too many wrongly think of when they hear the word “acceptance”.

  • timpko
    2 months ago

    You’re right. Too many think the word “acceptance” is giving in. I NEVER give in, which is part of the reason I’m still around. I’m informed about my various diseases and seek out and try new, safe treatments.

    I also never asked “why me?” Sometimes things just happen. Most often things just depend on one’s genes (I got some very good genes and some not so good genes) or other things one can’t control.

    The fact I have MS is simply a fact. There is no way I can change that fact, at least, currently. When there is a way to safely cure MS, I will be one of the first to sign up for that cure.

  • SueK
    2 months ago

    In my case the story is quite the opposite than noted in this article. When first diagnosed I was “obsessed” with being ill. I moaned, I groaned, I felt no one could possibly suffer as much as me. There was far too many unknowns to feel positive and secure. Lack of maturity and common sense made it far too easy to blow every symptom out of proportion.

    Now 20 plus years later, I accept MS as I do any other condition. You do what you can, accept your reality and make the most out of life. Illness is a fact of life. The moment you are born, you begin dying. That doesn’t mean you cannot do a lot of living in between. I am now facing far bigger monsters than just MS. And I will live my life to the fullest nonetheless!

  • 1kvxlap
    2 months ago

    Yes. This was my experience too. I heard MS was a “devastating disease’ but all the literature was so hopeful, I didn’t understand what I was facing and was scared. I went to support groups in order to understand better what might happen.

    18 years later, I am not so obsessed and am doing well, but I feel the black holes in my head. I am starting to battle some fatigue, which used not to bother me at all. I still can’t recognize an exacerbation, but I can tell that all my problems aren’t Just from aging. It is scarier now, even though I don’t obsess any longer because it is more real.

  • JenniferLC
    2 months ago

    Sigh. This makes so much sense to me but my situation is also so different. I had my first attack of optic neuritis 32 years ago. I started having serious problems with walking about twenty years ago. The symptoms would come and go. I went to doctor after doctor ever single one said the exact same thing. I just needed to “exercise and lose weight.” They almost all labeled me as a hypochondriac.

    Fast forward to March 2018 when I was hit by a catastrophic attack and was finally diagnosed. Because of that attack, I am blind in one eye and suffered serious cognitive damage. Looking back now, it all makes sense.

    I am newly diagnosed but I am an old sufferer. I can clearly see what this disease has done to me yet I am still learning. They think I am SPMS without the emotional awareness that comes from living with this disease.

    I feel completely undone with one foot on each side, newly diagnosed but an old pro.

  • Dave C
    2 months ago

    This brings back many memories. I was diagnosed 26 years ago. I felt brave and bold ready to adapt and overcome. Went to a couple MS support groups and came away that they were the biggest pity party on the planet. In hindsight this was the best take away, one that helps me even today. My desease is a train wreck waiting to happen over and over again. Flares are getting bad and worse tha flares, when I have a fever it’s all there, every last one of them. Now I sound just like those more experienced folks I met a long time ago. But, honestly when I start spiralling down that pity hole I just remember my first reaction and it helps the healing and I feel good about myself and my future.

  • Devin Garlit moderator author
    2 months ago

    Thanks for sharing @Dave C

  • AuburngirlinKY
    3 months ago

    Now that I have had MS for 15 years this article is one of the best for describing where I am now. For the first 12 years I described myself as the “poster child” for this disease. I had exacerbations that were bad but then would go away for months and I seemed fine. Told everyone that that eating 100% organic, whole foods and no process junk was better than any meds. I Still believe it is the best for everyone to live the longest, healthiest, best life they can but once I hit the13 year mark, I am no longer beating this disease and am no longer the positive person that thinks I am invincible and have basically beaten or mastered this debilitating disease.

  • Devin Garlit moderator author
    3 months ago

    Thank you @AuburngirlinKY, so sorry to hear what you’ve been through. It’s unfortunate that so many people learn the hard way that diet alone won’t cure a disease.

  • dgerbing
    3 months ago

    Devin I have been dealing with Ms for 10 years. I have found no relief. And doctors. Most know nothing. Others would say Ms has no pain ect. I will be relieved one day to sleep and move on.

  • Devin Garlit moderator author
    3 months ago

    Thank you @dgerbing, finding the right doctor is so important, they can be difficult to find, but don’t give up the search!

  • Happy Go Lucky
    4 months ago

    There was one more thing I wanted to comment on. When I was first diagnosed, I was so scared. I imagined that every possible disability would happen to me. It didn’t help that my Aunt told us that we should be looking into convalescent hospitals, because her friend was in one 8n two years. For those who are newly diagnosed, know that most of the stuff on the list won’t happen to you. Live your life the best that you can and ignore negotive noise. That’s all it is, noise. Your journey will not be the same as anyone elses. There are some really good times ahead for you despite the disease.

  • AuburngirlinKY
    3 months ago

    Happy Go Lucky how long have you been diagnosed? Because if it is less than 15 years you can’t know or say that. The majority of people are fine for the most part for the first 15 years. After that a lot of the things will happen to you.

  • Devin Garlit moderator author
    4 months ago

    Thank you @Happy Go Lucky! Really appreciate you sharing some of your story and wisdom!!

  • Happy Go Lucky
    4 months ago

    I have had MS for 29 years now. I still try to stay positive, but it has a different quality than it did in the past. The real secret for me, has been accepting the disease. This has been made easier with age. I no longer feel that I have to explain why I’m not working. I just say that I’m retired. Other people can’t see what I’m feeling and they don’t need to. They really can’t understand anyway. There is another part of aging that makes it easier in some ways, though I wish no I’ll on others. Many of our friends are having life altering illnesses as well. It’s been heartbreaking to lose friends to cancer, heart attacks etc. Everyone is challenged by something and often it’s something that I don’t completely understand. There was a quote from Death of a Salesman, that oddly comforts me. “Life is a casting off.” My husband finds it depressing, and I understand that. Maybe it comforts me because, I don’t feel that the things I’ve lost, while unique to M.S., are all that different than loses that other people experience. M.S. is unique in that it strikes when your still young, but being older gives me a different perspective. I don’t get annoyed at people who think you just need to be positive. That was me once upon a time. I also don’t want to scare people or rain on they’re parade. I’m happy for them when they are feeling well and hopeful. I had that too, and I want people to have the best life they can. Now I would like to just sum up where I’m at. Secondary Progessive. 57 years old, two adult children and a wonderful husband. We own our home and I work in a clay studio. I volunteer to monitor 3 hours a week in exchange for studio time. Summer is brutal for me, but it’s better since we moved to Oregon. I spend my days cleaning house, walking my dog, going to the Art Center as well as helping out at festivals when it’s not too hot, and various other things. It’s not a bad life. My legs are getting weaker, but I take medication for mobility. My house is not as clean as I would like it to be, but it’s not unhealthy either. I get very fatigue, helpful for binge watching and I have lots of time to keep up on politics and other issues that interest me. MS effects new everyday, I just do the best that I can everyday. What can I say, I’m happy despite it.

  • UmmCrystal
    3 months ago

    I am at the 12 year mark and things are waaaay different than I thought it would be. I recently lost the use of my left(dominant) hand. It doesn’t so much hurt as the stress of being super duper clumsy is giving me chest pain

  • ilene821
    4 months ago

    Thank you so much for writing this! I’ve had MS for 26 years, and I thought that I was crazy. I don’t feel the optimism that I read about many people having. Having MS has taken its toll on my body. Yes I’ve been able to stay on a Disease Modifying Drug for many years, but I’ve still had my body and symptoms change over time. I am so glad to know that I’m not alone with my feelings.

  • Devin Garlit moderator author
    4 months ago

    Thank you @ilene821, while we are all different, I think most MS publications tend to skew towards the positive. You are most certainly not alone though, there are many folks just like us!

  • Angelad496
    4 months ago

    I did not get to finish my comment. My phone glitched, anyway…

    And you frequently mentioned Everyone is different with this disease.

    I may have been officially diagnosed in 2015 but I know this is lived with me since 1989. So 26 years later I am on disability of course and no longer work. I use a wheelchair for distance, a cane in my bedroom and a rollater just about everywhere else. All of this is happened within the last 3 years since my official diagnosis.

    I know going to live in a sugar coated world and say this this dosease is not progressing. Clearly it is. But as you say this disease is different for everyone

    I have two paternal aunts with MS. One is 73 and still works part time and dates. The other is 83 and is very active with her American Indian heritage and attends powwows and still does intricate beading. I see clearly that they have balance issues, bow issues bladder issues we know the drill but they don’t let it keep them down and they’ve had this disease for over 30 years

    I have maternal 2nd cousin in the family who has since passed away but not from MS. She had MS since I was a little girl and and im 50 now. Genetic disease not related to MS is what killed her. However I can tell you she was 60 and was still walking but very slow and with a rollater…

    I guess what I’m trying to say is I know this disease works behind the background … it’s obvious to me but I’m not gonna sit there and resign myself to a depressing future and darkness and drooling. I am not one to give in. Call me a newebie if you want but I have never resigned myself to anything except death and taxes.

    I will continue to live my life as best I can and I will adjust as needed. I’m not saying this is going to be a walk in the park but no disease ever is. Technically MS has been with me for 30 years.

    Good luck to you and to all of us. We are all in this heavily patched sinking wooden boat but we’re not going down with the ship. We are 6′ above ground.

  • Angelad496
    4 months ago

    And you frequently mentioned Everyone is different with this disease.

    I may have been officially diagnosed in 2015 but I know this is lived with me since 1989. I am on disability of course and no longer work. I use a wheelchair for distance a cane in my bedroom and a role later just about everywhere else. All of this is happened within the last 3 years.

  • Devin Garlit moderator author
    4 months ago

    Thank you @Angelad496, appreciate you chiming in and sharing your experience!

  • markt
    4 months ago

    Hi Devin
    again a great and needed article !

    Im now at the 9 year mark and I must say the first 3 or so I just would not let it change me
    I worked even harder to do things that would push me. well
    I can say that was stupid of me but I needed to go thru the denial of it having any effect on my life
    now with things, I must say not getting better,
    I have many tough days even as I’m typing this my vision is all weird and I can’t see the screen all that well and lots of other fun things
    Im still working but its a real push every day and im thinking that will have to change pretty soon. Things just get to be too much for me anyway.
    I have every symptom that I have always had they don’t go away and from time to time they feel like getting mad and they raise the bar of the symptom again
    time seems not to be my friend at least when it comes to ms
    but I do what I can and now am aware that I can’t do what I want all the time and yes they all just build up

    I could have just said
    I agree with everything in your article that would have been faster but ….

    I enjoy all your writing
    thanks
    mark

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @markt, time may not be our friend, but we do what we can. We can still live pretty fulfilling, if not more fulfilling (because we can appreciate it more) than most people

  • esme2288
    4 months ago

    Hi Devin, I was diagnosed about 30 years ago, so you have a ways to go until you reach veteran’s status. Like you, I started out with some exacerbations, but there were no long term therapies available yet. But as long as everything eventually went away, which it mostly did, I could live with it. Then the exacerbations just stopped.

    That’s the normal course of this disease, by the way.

    Most of us felt great ten years into this disease. Some people tried crazy alternative therapies and they’re sure they’ve found the cure. Some people write books about it. They’re featured on MS Society Publications.

    But you’re right about the remissions. The disease doesn’t always remit. It just goes quiet while it’s still active in our brains, waiting for its moment to pop out right at the moment we started to think we had a future.

    It is a cruel, relentless disease.

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @esme2288, appreciate you chiming in!

  • Legsonstrike
    4 months ago

    I keep reading this over and over because I knew I had this beat but today it is beating me, so far for about six months now and I can’t convince my NEURO to do something to help me!! What can he do? I’m on my 8th DMT in 7 years, was told I’ve had MS for 20+years before I was diagnosed, the damage was already done, if only doctor’s knew about this disease and the symptoms before it was too late would have been nice!! I honestly do not think neurologist know the answer and I also believe Dr.Aaron Boster will eventually find something that will help us if not cure is!! He gets us!!

  • Devin Garlit moderator author
    4 months ago

    Thank you @Legsonstrike, I am sorry to hear what you’ve been through. I can not stress enough, if you are not happy with how your treatment is going, you should find a new neurologist, preferably one that specializes in MS. Not all doctors are created equal.

  • OSVALDO
    4 months ago

    MS is so unpredictable. My wife was diagnosed when she was 28 yrs old with RRMS in 1985, but 4 years before that she had an optic neuritis and no one related that with MS. She had been on many MS meds for many years, followed a healthy lifestyle and exercised , walking 4 miles daily . Basically had a “normal” life. Around 30 years after her optic neuritis at age 54 she progressed to SPMS with severe cognitive deficits, unable to retain new information, drive, follow a story during a movie and getting lost initially during driving, then also lost at home. Age 58-59 rapidly progressed into being physically impaired . Now age 63 she’s been over 3 years bedridden 100% disabled. Lost vision, speech and all voluntary body control and movement. She can only eat very small spoon fed portions of puréed food and gelatinized liquids. She chose not to have any gastric tubes before she lost her speech and I’m honoring her wishes. It’s been heartbreaking to watch her go through this stage. She is now essentially under hospice care at home. I’m fortunate to be able to hire excellent help for her when I’m not at home and that’s how I’ve kept sane. Depression hits very hard and frequently, specially during holidays and weekends at home. Not everyone progresses to this level of disability, but she did. Talk about unpredictable. I know you don’t die directly from MS , but she dreaded the thought of being disabled. I believe this is information everyone with MS needs to know. You don’t read of many patients with this stage of MS. My advice, follow your doctor’s recommendations and do everything and anything you want to do and enjoy life and your loved ones. You don’t know what’s next in life.

  • esme2288
    4 months ago

    My disease started the exact same way, but everybody tried so hard not to tell me. My father had MS. I knew what Optic Neuritis was and why anybody would have it, so they could insist that I must have forgotten the terrible flu I suffered recently to cause the vision problems, but I knew what I had.

    I’m about 30 years post-Optic Neuritis and I’m able to walk my dogs 2 miles a day, keep them fed and cared for, and sometimes even play outside for a while. On a good day I can clean something, or read, or interact on a forum. But they’re not all good days. I’m one of the lucky ones for today.

    Who knows what will happen tomorrow.

  • Devin Garlit moderator author
    4 months ago

    Thanks so much for sharing that @OSVALDO. We are all different, and while I know it can be scary, it’s important that people understand that there are a great many people who progress faster. So many don’t follow their doctor’s advice and it’s baffling to me.

  • Toddlius
    4 months ago

    good article. thank you.

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @Toddlius

  • NJB3
    4 months ago

    The years to diagnosis can be really tough. Too often misdiagnosis complicates receiving appropriate treatment early on. Suddenly year 10 has hit.

  • Devin Garlit moderator author
    4 months ago

    Thank you @NJB3, so very true. When you have a chronic illness, you begin to realize that not all doctors are created equal and have the same base of knowledge, it’s very frustrating.

    https://multiplesclerosis.net/living-with-ms/doctors-reminder-advocate-yourself/

  • TiaTia
    4 months ago

    I was recently diagnosed a month ago. But- the” symptoms ” that led to my diagnosis, I’ve been dealing with for years. My feeling is this, I’m more than relieved to finally have a term to explain all of this. So yes, I’m one of those “super optimistic people”. Knowing that I’m not crazy or making things up. (According to those in my life) gives me a sense of relief. If I cant be positive about that, i feel a bit sorry for those that look at this disease as a “death sentence”

  • Devin Garlit moderator author
    4 months ago

    Thank you @TiaTia, the relief of a diagnosis is such huge and comforting thing for so many. Even with all the advancements, it’s still hard to make fast and accurate diagnosis.

    https://multiplesclerosis.net/living-with-ms/relief-diagnosis/

  • MSNurse13
    5 months ago

    As an MS nurse who works with folks that have had this horrible disease 2 days, 2 years, 20 years etc I have to say I cringe when I read articles like this one. Everyone’s experience of the disease is drastically different and I worry about the fear and anxiety that will set in for some if they think that they opinions like yours are absolute fact. This has been your experience and the experience of many others which is heartbreaking – I honestly can’t imagine your level of frustration. However, many people with MS have a very different story to tell that is more positive. I see how at this point in your life the positive stories aren’t what you want to hear but that doesn’t make them less true. For patients newly diagnosed with MS that positive attitude and hope is crucial – that’s what keeps them compliant with their medication regimen, practicing good self care and coping with the concept of a potentially progressive illness. Please don’t take that from them. The final point that I would like to make that the medications that were available 10 or 20 years ago are drastically different than what we have now and the ability to prevent exacerbation with these medications may mean that they never experience what you have had to endure. Of course there are tons of folks you meet that have hit the 10 year slump – you were all subject to the same poor med selection. That is different now so please let the new generation of MSers find their own path because it may be entirely different.

  • Legsonstrike
    4 months ago

    Unless you have MS, you’ll never understand what we go through and how we have food and bad days and how hard it is to stay positive!! Please don’t comment on here unless you are walking in our shoes!! I do not agree with anything you just said!!

  • Michelle
    4 months ago

    MSNurse13- I kinda feel like you missed the point of what he wrote. He isn’t really saying the positivity and such of the newly diagnosed isn’t bad, not that we should take away the extreme hopeful articles, but that they need to respect that not everyone is still at that stage (highly optimistic), but not depressed either. Some of the newly diagnosed get downright nasty about it. He was also trying to point of how nasty people on the opposite side of things can be (I feel he was anyhow), and that both these extremes need to take a step back before they have their knee jerk reactions. I don’t think I’d necessarily fall into the veteran group or newly diagnosed get having MS for about 6 yrs, but I personally get heartily sick and tired of seeing all these articles enjoy people running marathons and doing all kings of things that one can do in a “normal life”-with out the MS. It gets depressing because it just rankings me of all I’ve lost the ability to do. Walking has become a challenge for me. I wish there were more articles talking about people with MS going through their studies with having to refine themselves and what they enjoy doing, how they adapt rubber lives, learn to accept using a cane, walker, wheel chair. How they find ways to deal with not being able to get out and about, services that help them live life to their fullest, and their new definitions of that. There are a lot of people with MS who are suffering with these issues, many who are along and have no idea of where to turn. We need more articles that speak to them and can give them hope as well, not just the newly diagnosed. Just my thoughts- hopefully they made sense without too many typos…

  • jpogli
    5 months ago

    As an MSer for over 29 years I found this article to be spot on. I understand your points MSNurse13 but I would like to offer you another perspective from one who has been there. When I was first diagnosed in 1990, I was frightened and in denial. This was before there were any DMD (and Google lol) and I didn’t really have any reason to be “positive”. I steered clear of ALL MS reading material. I just didn’t want to know. I continued to live my life always encouraged when I bounced back (mostly) from another exacerbation. After a few years i had better footing and I was ready to start learning more. My point is, don’t underestimate MSers ability to control the inflow of information. You’re absolutely correct that everyone’s MS is different. That’s exactly why there should be information available for ALL MSers-from the newly diagnosed who are afraid to delve too far and the veterans who have been through it for decades and can offer very valuable information to those who desire to hear it. We ALL need support and knowledge. Trust us to know what we are emotionally ready to handle. If someone starts reading an article that doesn’t really apply to them or that upsets them they have the ability to stop reading. Just like anybody else with a debilitating or terminal illness. The information is out there. Whether or not we seek it out is 100% our choice

  • MSNurse13
    5 months ago

    Thank you so much for your perspective — I think I need to have more faith in my patients! That’s a super valid point that folks will self limit and if they don’t, perhaps my feedback should be to take a break for a bit from the articles and circle back to it once they’ve had a chance to digest their diagnosis. Thank you so much! I wish you all the best 🙂

  • Devin Garlit moderator author
    5 months ago

    Hi @MSNurse13, thanks for the comment, however, you may want to actually read the entire article as it points out numerous times that this is not everyone’s experience. I cringe when I get comments like this and it’s clear someone hasn’t read or comprehended what was written and writes a long comment based solely on a title. If you did read it, read it again. I’ve been writing a long time and have come across all kinds of negative comments, even personal attacks, your’s is the first to really, really upset me. Not 100% sure, maybe it’s because you profess to be an “MS nurse” (but not a neurologist, practitioner, patient, or even family of someone with the disease) and should know better and be able to comprehend more. So please, before you speak, read this and many of my other articles before you jump on here and get on your soap box (though I imagine by including MSNurse in your username, you’re here to preach not understand, not to be an empathetic person). Go ahead and read the comments too and try to understand that 90% of what’s out there is telling people to be positive, which alienates a considerable part of the MS population. Yes, there is hope for many people now (you can read one of my many pieces about that here: https://multiplesclerosis.net/living-with-ms/hope/), but there are a whole lot of people who are not in that new generation, who suffer because people like you think you know it all, this article is for them. If you can’t understand that, I fear for those under your care.

  • MSNurse13
    5 months ago

    @devin gartlit— thank you so much for taking the time to respond – I know that can be tough when so upset. I appreciate so many of your articles and again apologize for hitting a nerve. I think what we’ve uncovered here is that we’re two passionate people that want so badly to help the MS community. Although I work with so many folks with MS, one of my dearest friends has it, and I have a difficult autoimmune disease, at the end of the day I will never fully get it. I try very, very hard & I always hope that I am helping but the bottom line is that I need to be less reactive and more receptive to the many different viewpoints out there. Thank you for what you do and I will certainly keep you in mind as I identify themes that may be able to help with 🙂

  • Devin Garlit moderator author
    5 months ago

    Also, @msnurse13, if you have things that you think should be said or talked about for those under your care, please message me, send me ideas, topics, I’m trying to be helpful to as many people as I can, but as you can see, that can be difficult with a disease that takes such a varied path. I am all ears though and would live to hear more of your perspective. I think you are in a unique position and I’d love to learn from it.

  • Devin Garlit moderator author
    5 months ago

    @MSNurse13, I too am sorry for the way I came off, as I said, for whatever reason, I’ve rarely been upset so much by a comment. As I’ve said, the MS experience varies widely. There is an overwhelming amount of information and articles out there for the newly diagnosed, to the point that it can leave many longtime sufferers and rapidly progressing patients left without many resources, without a voice. It can be extremely detrimental to those folks to see so much geared towards the positive and newly diagnosed, in short, they are abandoned. If a newly diagnosed person comes across this, there are more than mentions that this is one person’s experience, if they can’t understand that, with the massive amount of other information geared towards the newly diagnosed, then I have a feeling that they should discuss that more with someone. This website covers every aspect of MS, every potential course of the disease. So while you may cringe at how a newly diagnosed person sees this, please understand that it is extremely helpful to many people. The number one helpful thing to many people with this disease, is see that others actually understand what they’ve been through or are going through. Like it or not, this experience is common for many people. Those people deserve a voice too.

  • MSNurse13
    5 months ago

    Wow, not sure where to begin. I did read your article fully – twice actually. I also read the comments. I read a lot of your articles to help me better empathize with and support my patients and their families. I’m not trying to take away your experience or that of other folks in the same boat. My point was that although everything you said is very true for you and lots of others there are just as many to whom it doesn’t apply. Yes you do say a few times that everyone is different yet it always seemed to be followed up with a “but…” — it just read as aggressive and I was offering a counter viewpoint. I’m not sure what your point was in stating that I’m only a nurse & not a practitioner etc. I didn’t realize I needed to state all of my qualifications to comment but the truth is that I have a very close friend with MS and work in a very specialized area serving primarily MS patients. I have the pleasure of listening to several patients a day share their experiences and those conversations are what caused my reaction. Many of my patients that are newly diagnosed express how hopeless and scared they feel after reading articles like these. Every single day that is the feedback I get. I’m not saying you shouldn’t write it, I’m only saying that it’s not always going to be perceived the way you’re intending. My apologies for upsetting you. I hope that in the future your able to be less defensive and more open to differing opinions- after all isn’t the the whole point of these articles? Regardless, I do wish you the best and hope that you find peace.

  • chriscoxrox
    5 months ago

    I’m in year 13 and completely agree with you. Well said !

  • Devin Garlit moderator author
    5 months ago

    Thank you @chriscoxrox!

  • thatgirl
    5 months ago

    I always feel like I should tell these people who are annoyed to be told “You don’t look sick” to be thankful for that. It’s very disheartening to have visible symptoms, like really bad issues even walking or even standing, especially when you’re under 40.
    I so often hear things like “Oh, my coworker Jane Doe has ms but you’d never even know unless she told you!” I’m truly happy for Jane Doe, but she isn’t me. I actually wish that I was her. I was for about 9 years. I wish so much that I was her still, but I’m not.

  • Shelby Comito moderator
    5 months ago

    Hi @thatgirl, many here discuss how frustrating the invisible aspects of MS can be, but I think you so accurately touch on how heartbreaking the alternative can be for others. Thanks so much for shedding light on this and taking the time to share your perspective and experience. We’re thinking of you and here for you. – Shelby, MultipleSclerosis.net Team Member

  • esme2288
    4 months ago

    I’m late to this conversation, but I couldn’t let that comment go without my response. You mention that the invisible aspects of MS can be frustration. Then you refer to “the alternative,” which I assume to be paralysis of varying degrees, as “heartbreaking.”

    Please consider that, as a writer, an academian, a person valued for my intellect above all else, that the invisible aspects of MS for me, including a loss of cognition, of memory, of clarity of thought, to be much, much closer to heartbreaking for me than the loss of use of my arms and/or my legs would have been.

    Of course there are some whose disease is fundamentally worse than mine. There are people who suffer worse than I do and those who suffer less. We are all different, but we are also similar in that we are all suffering.

    Please don’t imply that because my symptoms are invisible that they are any less significant or heartbreaking than more visible symptoms would be. I’m not prepared to be dismissed on an MS forum the way I have been in the disabled community at large.

  • Devin Garlit moderator author
    5 months ago

    Thank you @thatgirl, whenever I hear someone compare me to someone else with the disease (as we all have happen so often), I often think that person probably isn’t close to as well as they let you believe.

  • OneAverageWoman
    5 months ago

    I’m 13 years in and I can concur with your commentary.
    I remember when I was fairly new in the Community and someone that was a little jaded and his response while not very kind gave me pause and I needed to just see it from others perspective. Other MSers came to my defense at that time and I had hope that not everyone would be the same.
    When possible I encourage and give my perspective in the most kind aspect I can muster up whatever the situation.
    Thanks for this article.

  • Devin Garlit moderator author
    5 months ago

    Thanks so much @OneAverageWoman, it can be hard to see other’s perspectives. I always hope, and try myself, to take a step back before engaging others and I try to remember how different this disease can be for everyone.

  • SLewis09
    5 months ago

    Yes!! So true Devin. Once again you have hit the nail on the head.

  • Devin Garlit moderator author
    5 months ago

    Thanks @SLewis09, appreciate you taking the time to say that!

  • Grace261975
    5 months ago

    my story is a little different 2 years ago I went from numb and tingling from the waist down to the same thing from the neck down. burning sensation in my feet on top of pins and needles in my feet all within a week. it never came and went. noticed it knew day and a week later boom. After I got diagnosed. It has stayed the same. I have good days and bad depends on the weather or if I am stressed or didnt get enough sleep. still trying to work on meds. had a reaction to one. some I can not take because of heart issues. I have now gotten on disability. But I am under relapse and remitting. not sure what remitting might be since I have my whole body that is that way. It is hard mentally some days. I am 44 years old. I have 3 grandchildren. Who I pretty much are raising so it is a challenge some days. if it is true after 10 years, I am screwed. lol. No worries just go on day by day. Live like it is your last.

  • esme2288
    4 months ago

    Bless you for taking care of those babies even while you suffer such pain and discomfort. One of the hardest things for me to accept as I watched my children grow up, was that if they ever had children I wouldn’t be able to go be of help to them the way I always wanted to be. Between the near crippling fatigue, the brain fog, forgetfulness, seering pain in my feet, I don’t think I’ll be a bit of help to a new mother. That alone breaks my heart.

    I hope that when the time comes, when/if I ever have a grandchild, I have enough strength left to do as much as possible to be a part of that child’s life.

  • Devin Garlit moderator author
    5 months ago

    Thank you @Grace261975, I think more than any other disease, with MS, it’s important to remember that symptoms and progression can vary so incredibly from person to person. While this is my experience and that of some others, it certainly isn’t everyone’s. Whether you stay the same, get better, or get worse, the important thing to remember is that you will adapt. That’s something that comes with time, no matter what, this disease forces you to learn to adapt. No matter what happens, you’ll be in a better position to handle it because of the experiences that got you there. MS has a way of making some strong and tough people out of folks who never realized they had it in them!

  • AnneHefner
    5 months ago

    I appreciate your perspective, however, your last sentence bothers me:
    “The more recently diagnosed also need to realize that because MS isn’t a big problem for you yet, that doesn’t mean it won’t be.”
    I was diagnosed almost 21 years ago after 15 months of numb hands that started at the beginning of my 3rd pregnancy and that my OB suspected was pregnancy related carpal tunnel syndrome. Long story short, when the baby was 8 months old, I had an MRI that confirmed the MS diagnosis. My ONLY noticeable symptom has been the numb hands until a few years ago when I began to notice that I was becoming unusually heat sensitive. To me, that is worse than the numbness. Never got an “exacerbation”, never list a day of work, never any pain, etc. that many individuals experience. My first neurologist told me USUALLY what one experiences within the first 5 years post Dx is how it will stay. Aside from my heat intolerance, that has held true for me.
    It doesn’t have to get worse. There are so many more treatment options available now than when I was first diagnosed. I have been on Copaxone since 8 months post Dx and have been doing fine. My last
    MRI even showed slight shrinkage of one of my lesions.
    I wish you the best in your journey as I pray for a cure for all of us.

  • esme2288
    4 months ago

    My father had MS, too, and I don’t remember ever hearing him complain. He got up, went to work every day, came home. Life just went on. He was in a train wreck that injured his back causing lifelong pain. He was hit by a truck, had bladder cancer, and after all that there was just no telling what was causing what. But as he got older, into his 70’s he showed loss of balance and coordination. He walked with a cain and was, from appearances, just fine. Of course he was from a generation that did not complain, so I’ll never know if there was more.

    I sincerely hope you enjoy good health for the remainder of your life!

  • vvxjr9
    4 months ago

    Wow, I don’t know how he did it. I’ve had MS for over 40 years and have chronic back aches because of my spinal scolosis, but now it just doesn’t seem so bad in comparison to what your father went through.

  • Michelletabb
    9 months ago

    Thank you so much Devin..for sharing your story however I may have a bit of a different take on it than you do.
    I was diagnosed in 08…I’ve had MS since 2002. Having it now for 17 years…I just have to say this….it’s still not a problem for me yet. I refuse to let it be.
    ABOVE ALL ELSE….you are a warrior and Mind Over Matter… trumps all. Always.
    Who is to say it won’t get better? Who’s to say there won’t be a cure soon? Who’s to say it must get worse? Who’s to say every doctor is right? Why must we decline? If there is even one person who was ever diagnosed with this and just died of old age….that means it can be done. I’ll be one as well. I don’t believe labels or decline….i have seen enough of that on the news. Lol I feel better than I have in years. Health….like happiness….is a state of mind. At least that’s my story.it’s been working very well for me….im 46 and have 4 grandchildren. Living n loving life….living in the now..embracing the quality of life…is key. We are more powerful than we think.
    Thank you for letting me throw in my 2c
    Michelle Tabb

    Editor’s note: Adjusted to comply with community rules

  • Devin Garlit moderator author
    9 months ago

    Hi @Michelletabb, have you ever considered that with a disease like MS, that affects everyone a bit differently, that you simply have an easier course of it than others? Are you saying that the many that suffer simply don’t have a good attitude? While a good attitude is important, it has nothing to do with the damage the disease does. I’m happy for you that things are going well, but please understand that your line of thinking is very much a slap in the face to a great many people who do have a good attitude, but yet still can’t walk, or still suffer from terrible pain, or crushing fatigue.

  • asapcynthia
    5 months ago

    MS is a b****. It dangles hope and optimism and then boom. Or rather ‘poof’. I got diagnosed at 34. I can trace my very first symptom ( Lmittes sign) to the summer I was 22. I was sitting on a bar stool after a softball game, and I noticed when I brought my chin to my chest that electrical zing. I even asked my friends ‘hey when you bend your neck down does it feel like you stuck your finger in a light socket?’ and they all looked at me like I was nuts. It stopped and I didn’t think about it until I developed foot drop, started tripping over things that weren’t there, and kept bumping people when I walked with them, and kept banging into walls when I was alone. One MRI later diagnosed as ‘possible’ MS. Then ‘probably MS’, and then ‘definate’ MS. So I read what I could find and went to some support group meetings, and while everyone sat around chit chatting I stood up and said aren’t you PISSED? Why am I the only one angry? And the people just looked at me and said sooner or later you get used to it. Well, that wasn’t what I wanted to hear. I had two little kids and a husband who recently started his own business, I was the main breadwinner, and had a whole lot of plans that did not include MS. So I looked at it as my health being a hourglass, daylight was burning so I fast tracked myself and tried to outrun the devil. So here I am now, 60 years old, on disability, and still pissed. But all those fears either came true or they didn’t. The time passed regardless of my attitude. I guess I thought I’d figure it out the future when I got there. So that’s what I’m doing now. I don’t really think my attitude was toxic or negative, but was realistic. What was coming down the pike wasn’t my concern, but the diagnosis meant I had a sense of urgency to get as much done as I could before the clock ran out. But the past 25 years has taught me a lot about life, myself, and I guess making peace with this uninvited guest. I have survived, my kids thrived, and my husband probably had the hardest time of all watching someone he loved carry this burden alone. But here we are. If you really want some perspective, my first neurologist and one of my physical therapists both passed away from cancer. So at least I am here to celebrate the success of those I love. Maybe I won’t dance at their weddings, but so what? At least I’m here to see them. I hope I’m done being pissed by then.

  • Michelletabb
    9 months ago

    Never for a second did i intend for that to feel like a slap in the face.
    I’ll not comment on what works for me anymore.
    I wish you the best and sorryi for offending everyone!

  • ss46sh
    9 months ago

    Hello Devin
    My diagnosis was in 1986. I was determined not to let MS interfere with my life plans. My wife and i talked about adding more children and whether or not MS would prevent me from being the hands on Dad i was to our first two children. Our second child was born two months after my diagnosis. We decided to have more children. We have four great children. Another decision i made was to not use MS as a reason to be uninvolved. During my first decade with MS I continued to work and coach three sports. I will not list all my activities but in 1997 i was awarded the NMSS achievement award in Oregon. That was over twenty years ago. Are the exacerbations taking a toll on me after 34 years? Certainly but with five grandchildren and help from my family and friends i am still contributing to my own well being. Each day i try and do everything i am capable of doing even if it takes longer. The saying if you do not use it you lose it is my mantra. I take no medications except one pain reliever for a sleep aid. MS is my lifetime opponent and with over twenty years an athlete and thirty years coaching i intend to challenge my MS for as long as i can. Being positive is necessary for my well being.

  • esme2288
    4 months ago

    One of the things I resent most about MS is how easily you actually can lose something regardless of how much you use it. I never stopped thinking, but lost parts of my cognition anyway.

    Everybody walks right up until they can’t, don’t they? MS attacks the protective layer of the neurons in your brain. If it happens to do so in the very spot that controls your ability to walk, you will no longer be able to walk. It might happen gradually, or it might happen suddenly. I sincerely hope it won’t happen at all.

    But your implication that those of us who have more severe symptoms than you do have simply not been using the right muscles enough is nothing short of ignorant and insulting. Your immune system doesn’t care how positive your outlook is.

  • Michelletabb
    9 months ago

    Wow…yes… that’s exactly what I mean! Awesome to know it’s working for others! I admire your strength indeed.

  • Anne
    9 months ago

    Thanks Devin, you nailed my experience thus far! Dx’d 19 years. At first I bounced back like nothing happened. Although I haven’t had an exacerbation in years, I can “feel” every one I’ve ever had and the nerve pain is just getting worse. Do I still have a positive attitude? Yes, of course I do, but it is tempered. xx

  • Jharris29
    9 months ago

    Thanks for writing this. I could really relate & “see” myself. The past couple of years have been hard on me. I’m at that point where all my disabilities have progressed so much MS truly has me. Some days I’m super depressed while others not. Acceptance is the key to the days I’m not. My issues directly stem from others who do not accept that MS has me – spefically my S/O. I tried again to explain progression to him after reading this. He refuses to accept that I am doing all I can to “get better”. He’s an exercise/health food/supplement addict and is sure that if I exercise more (or whatever his current cure entails) I will be fine. It is frustrating. If anyone knows a website or articles I can share with him I would appreciate it. I am getting pretty good at just toning him out…..or contemplating leaving which is a shame after 40 plus years. I just can’t see allowing this to continue. Ranting done – thanks for allowing me to say what is in my heart.

  • Devin Garlit moderator author
    9 months ago

    Thank you @jharris29, ugh, so sorry to hear of your situation. It sounds like your SO really needs to learn more about the disease. If he really wants to help, tell him the best thing he can do is to learn more about the disease, read more about.

  • Donna Steigleder moderator
    9 months ago

    @jharris29 From a caregiver’s perspective, I see two possible situations from what you describe. (1) you S/O has taken his job of “caregiver” too literally and feels he knows best what you need to get better which sometimes happens. (we get this God complex and we think it’s our job to make sure we research what would be the best things for you to have and then make sure you have them because that’s what being a good caregiver is all about) or (2) it’s a man thing – he just wants to “fix” you. Men fix things and he tries to fix you. Without those two roles, he doesn’t know what he’s supposed to do. It would probably help a lot if you both could talk openly about how you’re feeling and try going to counseling to talk through it. Men and women just think really differently. Donna Steigleder

  • nmbuy
    9 months ago

    Thank you Devin,

    You are spot on. At about the 15 year mark, I just couldn’t bounce back.

  • Devin Garlit moderator author
    9 months ago

    Thank you @nmbuy, appreciate you reading!

  • KateKelly
    9 months ago

    I am 59. I was diagnosed twenty years ago, but I had my first episode when I was 18, so I have been fighting this disease all my adult life. Looking back even further I recognize symptoms of the disease even when I was a child. Like you I felt pretty good for the first few years after diagnosis. I ran 10kms most days and further on the weekends. I was busy with a srptressful job in healthcare. I was raising two sons, married with small farm as well. Within 10 years of diagnosis I was disabled enough to require hospitalization in a rehab facility using a power chair and living in denial. Things leveled off, now I am surviving, but have daily difficulties. I have accepted my condition and I don’t lose sleep over it. I am content, if disappointed in the outcome of my life. I had a different plan, but “the best laid plans” and all that.

  • Devin Garlit moderator author
    9 months ago

    Thank you for sharing some of your story @KateKelly, finding acceptance is such a huge part of successfully dealing with this disease!

  • JustsayN
    9 months ago

    After 19 yrs with MS, I feel compelled to help others. I’m working on starting a support group to meet monthly at my fully accessible church I intend to reach out to the MS community through sites and organizations like this one. Of course I’ll be on FB Twitter You Tube and others. Open to ideas on how toget started

  • Devin Garlit moderator author
    9 months ago

    Thank you @JustsayN, that sounds great! A good way to get started would be to mention it to your local MS society chapter or even your neurologist’s office, they may be able to provide some help in getting in touch with others around you who suffer from the disease

  • swampdoctor dave
    9 months ago

    Devin,

    Good article and good writing. It is not easy to put into words how MS can and will affect us. I was diagnosed 19 years ago and I found your article to right on point. Thank you for your insights.

    Dave

  • Devin Garlit moderator author
    9 months ago

    Thanks so much @swampdoctor dave, very much appreciated!

  • chong61
    9 months ago

    I am one of the old and seasoned MS people. Over 20 years and I can relate to every symptom that can be. I have not had a day without pain in over 10 years.

    I will say the first 7-8 years I kept saying to myself you know I can handle this. I just have to rest if I get tired and I followed that for those years. Then those years went away.

    My Dr. said you have now moved into the Secondary Progressive and that is when my body did not think it was something I could hide and handle with ease. It became a monster that has taken all my ensuing years. Today I feel lucky if I can just manage to get out of bed without having to manually lift my numb feet and legs. I have learned to stand and move around but my house is now arranged where I can navigate and if I fall most often it will be on a soft chair.

    Enjoy the good ” this disease is not bad years” and I hope you remain in the R/R forever.

  • Donna Steigleder moderator
    9 months ago

    It’s great to see this post from Devin from 2017 generating such a spirited discussion again. Thanks to all of you for joining in and sharing your views. @SueK, I really think you’re on to something with what you shared. Our reaction to MS is a very personal thing based on who we are and where we’ve been in our lives. It’s our own story of challenges and adversity, triumphs and glory that make us the unique people we are. Our diversity unifies us because we realize none of us are the same, but all of us share in a common struggle. Thanks for being our community.

  • SueK
    9 months ago

    Thank you so much Donna. Your words ring so true.

  • asapcynthia
    9 months ago

    Well, as one of the old timers, I hope I didn’t cause anybody any stress. I’m beyond the ‘pollyanna’ phase, I don’t consider my self as jaded and pissy, but I did have to face the realistic prognosis of having ms. It happened on a family vacation at the airport. My husband had to wrangle two kids, luggage and me and my denial that I could keep up. He wanted me to sit in a wheelchair and I refused. But I looked at him and felt I needed to shift my perception to make things easier for him. So I sat in the chair and burst into tears. He piled the luggage on top of me, I bet people wondered why is that suitcase crying? My kids pushed me like it wasi a carnival ride, dodging people like bowling pins. What was devastating to me seemed like a game for them. So I had a reality check at O’hare. Big time. But that’s me. I hope everyone who gets diagnosed falls into the benign category. But for me, I have had ms for 25 years and the snowflakes are starting to stick. But I’m here to tell the tale. And if it sounds like it sucks, well it does. But it could be so much worse.

  • nmbuy
    9 months ago

    I get it. You are not stressing me. You are helping me. Thank you for giving my experience voice!

  • SueK
    9 months ago

    I spent 20 years undiagnosed and now have been dxd for yet another 20. For me the diagnosis was a big relief. At last! I am not crazy, nor a hypochondriac! And I do not have a brain tumor as I feared. The first three years were a breeze. Then a second doctor claimed I did not have MS as far as he could “see”. (Not that he tested that theory). He removed me from the Copaxone that had been keeping me relapse free. Within a year I had a second major attack. First sign was I could not speak and developed amnesia. Not fun, but my husband enjoyed the short lived silence! . The amnesia lasted about three months and left a good deal of cognitive issues in it’s wake. Now twenty years later, I admit this has certainly not been a walk in the park, but indeed, it could be worse. I am now have SPMS, but I am holding my own and am still standing.

  • SueK
    9 months ago

    Excellent post, however, let’s look at it another way. Why are we so different? It is not only the MS or how long we have had it that determines our attitudes and experiences. It’s also different personalities, nature and nurture, current and past circumstances.

    You can have a newly diagnosed person that has a fighting spirit, is thrilled to finally have a diagnosis that explains everything. Their symptoms may not be very severe early on leaving them believing it will always be this way. They speak out proudly, “I have MS, but MS does not have me!” Most certainly a positive attitude we all should be fortunate enough to own.

    On the other hand, you may have someone who has fought long for a dx, is shattered by the news, struggling with severe depression, not adjusting well, and is overly sensitive to pain, uncertainty and change. They may be drowning in sorrow and perhaps, self pity.

    We all have unique upbringings, different levels of exposure to challenge and adversity, a wide range of tolerance for pain and discomfort, different support systems. These all determine how we “cope” or “deal” with new situation, good or bad. Young or old, we all respond differently. Some of this is written in our DNA, some learned behaviors, some is very personal and spiritual in nature. This represents two spots on a very large spectrum.

    As for those who have had MS for longer, some find it has become second nature. They have learned to accept it as white noise in everyday living. After years of learning both from personal research and the School of Hard Knocks, it actually becomes easier, even if our bodies may not agree. They remain positive spiritually and emotionally and, as so many hate to hear, know, that things could be a lot worse. They count their blessings rather than their pains, and keep on keeping on.

    On the other hand, as symptoms worsen, some may lose the ability to keep on S’mylin. In turn they become bitter, especially those without a solid support system. They resent (or envy, which ever way you look at it) those having an easier go of it. Others go farther, giving up completely. Again, it all depends on the individual. Indeed we are all unique in many ways.

    So the type of MS, the number of symptoms, the years one has had it may not be the deciding factor on how we view ourselves or others with MS. It could also be that one lesion in the wrong spot that can change our personalities and cognition for good.

    MS is all about what you put into it and what you take from it. It can be a curse or a blessing from day one. It can get better ir worse with time. It all depends on the individual within.

  • 6fh0mq
    9 months ago

    Thanks for the article Devin. You bring up a good point. At first – it’s almost a challenge – a “how I beat MS” kind of thing. Then the years start accumulating…and I think you just kinda get beat up. The challenge turns into coping and then the coping starts getting a bit – well – tiresome,depressing. It’s a journey – right?

  • Devin Garlit moderator author
    9 months ago

    Thank you @6fh0mq, very true!

  • JimmyMac
    9 months ago

    Again Devin, great article and writing too. I think one thing to remember when you are close to your diagnosis is you don’t want to hear about the long term results of MS or at least I didn’t. I had a relative through marriage that gave me valuable tips that I ignored until I was further away from my diagnosis date. When I was newer diagnosed, I knew the stories from those that had been diagnosed for a while but really didn’t want to think about them until they applied short of taking vitamins and living a heathier life style.

  • Devin Garlit moderator author
    9 months ago

    Thank you @JimmyMac, very good point!

  • lucy1959
    9 months ago

    I have been living with MS for 36 years and while I respect the spirit behind “fighting” MS and being a “warrior”, and I certainly subscribed to those feelings, I now am viewing things a bit differently. I have more of a co-parent relationship with MS as we share this body of mine…

  • Devin Garlit moderator author
    9 months ago

    Thanks for sharing @lucy1959, I never thought ofg i like that, I like it!

  • nmbuy
    9 months ago

    Lucy–I have never heard that term used: co-parent. It struck me. I have never had children. I think about the phrase: Stay strong & true to yourself from @mom2blukat

    You may have sparked a new line of thinking for me. Thank you!

  • lucy1959
    9 months ago

    Thanks. I just wanted to stop fighting so hard and rather lean into it and listen. Thus, I now co-parent with MS and the intense battle is now more of a friendly conversation about what is best for me on any given day. We co-parent 🙂

  • Watergirl516
    9 months ago

    You wrote something a while ago that I liked and you did it again, Thanks and keep writing!

  • Primrose68
    9 months ago

    I was diagnosed about 35 years ago. A strange thing happened about 6 years ago, my balance was off. Then a short time later, I was falling and unable to get up without a LOT of effort ! I had never taken a DMT , and, basically had never been offered one, as, I had been doing so well.After my beloved Neurologist passed away, I turned to the Brigham and Womens MS Clinic, and, was advised to start Ocrevus. I have had two full Infusions, and though I can’t say I have noticed any major improvement, I haven’t had any exacerbations. I am about to turn 70, still walking ( with help sometimes), BUT-everyone IS Different !I am also a Peer Support Counselor -I have seen many different kinds of MS. Love and Best wishes to ALL !

  • trilin16
    1 year ago

    Hello I was diagnosed in 2005 and I agree with you Devin the first 10 years were very different as for my walking, eyesight, balance etc. I now have to use a walker n sometimes a wheelchair. This disease can be very challenging

  • mom2blukat
    2 years ago

    Hello Devin. I’m a new poster, long time reader of this support site. You have some valuable insights, as do many of your MS posters. I just turned 70 last month & was diagnosed with this disease at age 21. Back in the days when everything that was tested & tried, was basically “medieval ” for this disease. Certainly, experimental. Initially, I was so badly, and suddenly, stricken, I was told I would be dead within two years..by all but one specialist. Some prognosis, huh? Within the first year, it certainly seemed that way. From initial scotomas from the optic neuritis, quickly followed by numbness, leg & arm weakness, slurred speech, even loss of smell. By the end of that first year, I could no longer stand & was in & out of hospitals. To little avail. Given a lot neurological tests & any experimental meds, supplemens, therapies. Back in early 70s…there were no CT or MRI machines. Just basic EEG totrture machines & xrays. It all just got worse, no matter what. Certainly seemed time was running out for this 22 yr old. And, the awful ‘icing’ on that misery cake was I was obviously forced to take an ‘early discharge’ by two months from my military service when this first struck. Talk about terrified!
    But, with the aid of my soon to be husband…and my apparent non-acceptance to go down without a fight.,I got thru THE worst times.
    I repeatedly changed dietary issues, medicine types, therapy types, etc.
    Became my own best advocate. Learned everything possible about this awful enemy…over & over again. Especially, since the “rules” changed from year to year & decade to decade. And, finally the diagnosis went to “relapsing-remitting”…however, I agree about those words not being quite appropriate. I also think ‘excaberation event’ a much better description.
    And, those can be SO different each time. The disease is SO individual for each patient. And, now, at this age, just like every other old/past injury throughout life…all the old nerve damage seems to be re-announcing itself once again, often with ‘new’ symptoms. Plus, there are the comorbidities of old age afflictions like osteoarthritis, heart issues, adult asthma, etc. My list gets longer each year. No fun having to now have constant body maIntenance as my “day job”. And, yes, throughout all these decades, I would get myself into such remissive states, that I could hold full time jobs, repeatedly….even finally able to actually retire. But, I was constantly reminded of the insidious MS issue…via excaberations that would be barely noticeable (only to me usually)to the “knock down” nastier bouts. I would go a few years just as if it was never there…and, as I aged, I realized anything could trigger an attack….a bad case of flu, a surgical procedure, a severe stress event, etc. As I made it to about age 45, I began to experience more noticeable & more frequent, albeit often shorter, excaberations. Figured I had learned how to handle it. After I took an early retirement at age 57, the MS was making itself known with “new” damage & reminding me of the old damages. Ergo: compounding issues…especially, at present. Along with various new age-related problems. So…the battle is back to increasing uphill struggle – once again. But, altho, I am back to keeping a cane with me because of seemingly permanent balance problems & constant fatigue…I do my best.
    I try to listen to my body, document what helps or not (mostly for myself, as well as my latest neurologist), try to keep my mind engaged, do my best to educate “normal” folks about this inocuous appearing disease, & constantly give myself pep talks as needed. 🙂 Some days are obviouly nastier than others. I have been thru several spectrums of this scary, crazy disease….would rather not last “forever” in an ongoing debilitated state….my gawd….be like this into late 80s or more? Good grief. But, there’s a part of me that just gets SO curious – willl anything ever be a big help? For this weird disease – or, any of the other awful afflictions out there? How will I handle things next? What can I personally do? All the big, and not so big questions….regardless of how scary they sound.
    And, I am, of course, amazed that I am still around to fight another day.
    Many of the medical people who gave me that awful death prognosis, decades ago….passed on way before me. Pardon my “snugness”, but,after all I have endured & continue to endure…there are days that I like being a bit “smug”. Thank you for allowing me to share. And, thank you for having such a forum for any of us to share & comment. After all, this too, is a form of therapy. Regardless of being newly diagnosed or still battling whatever form or severity of this awful disease….don’t give up on yourself. Learn to “read” your particular type of MS, learn all the facts you can, if needed – have someone who you can trust to help you learn, and be sure of your info. Apply as best as possible to your situation. Find out about new meds & therapies….but be sure they’re right for your case. And, don’t be afraid to question everything. I learned that the hard way.
    Stay strong & true to yourself. Have a good holiday!

  • nmbuy
    9 months ago

    How wonderful you are. Thank you for this. What a different world before DMT came out in 90’s.

    I love your words: Stay strong & true to yourself.
    No judgement. Big hug!

  • PetieJ
    2 years ago

    Yup, “remitting” is deceiving. By definition it should mean once you get past your “relapase” (which, to me, seems like it would be the Same situation reoccurring—not some new, bizarre, omg what is This going on? Event). Oh, they can be events alright!!
    ‘Remitting’. Nobody told me after a blinding optic neuritis event that got me diagnosed in the first place-26 Years ago-that my eyesight would never be the same ever again. Just the other night I must’ve taken my glasses off ten times trying to clean them so I could see more clearly than I was. I ended up so frustrated I just threw them-thankfully landing on the couch.
    I appreciated the fact that you pointed out, Devin, reminded us, that we are all different. If we peeps with MS can kinda sorta ‘get’ what someone else is going thru, is it any wonder the people around us don’t ‘get it’?!! My husband told my son via text that I had taken a few falls recently-some from dizziness, others from stumbling-and our son said something to the effect that ‘bruised and being sore can heal’. It made me wonder, after all these years does he think if you don’t see it, it isn’t there? Most of my bruises can’t be seen. They’d croak if I showed them my legs from my weekly shot!
    Early on, for the most part my situation was invisible, but when I’d have an exacerbation, boy would I have one. And it would be the only time ever for it to happen. For example, when my head became a magnet to the floor. I’d try to stand up and would literally be pulled down to the floor, my head determined to attach itself there. A bit inconvenient to be sure. I had to crawl every where. In 26 years it was the only time I ever sought out a doctor for an ‘attack’. We had just moved to a new state, but thankfully, Dan worked in the medical field and knew lots of other medical people. Went to this neuro, but no explanation, no meds, no help. I never bothered anyone again.
    So, early on, between “relapses” that eventually “remitted”, I felt more or less as if I was living a reasonably normal life. Then little by little, incidents came up but never entirely went away.
    I feel like a different person mentally, emotionally, and obviously physically. Having bits and pieces taken away from you add up. Abilities, skills, memories, thoughts, normal functions, purpose, disappearing evolves into a different soul. I have to remind myself, this body is “transportation”. It’ll get me by til I just don’t need it anymore.
    Maybe this is a whole different subject but…
    I dread the holidays. I’d rather send DJ out the door and he go be with the family for Thxgiving, so I can stay home alone. Tho I don’t think he’d go w/out me. More pressure. I’ve become anti-social. I don’t go out, I don’t go anywhere besides appointments to docs or the very occasional haircut. I’m home alone all day. If I’m up to walking, I go in the mornings while it’s still dark (& cool) so I’m basically unseen, and unlikely to run into anyone. I hate it! But at the same time, I don’t know that I have it in me to change it. I surf on waves of depression and occasionally glide towards the shore that brings a break. A knock on the door makes my heart stop, then beat overtime. A ringing phone does the same thing.
    I wonder again and again if I should try to go to a support group. But I don’t want to go and add insult to injury by talking the problems times how many people?!??
    I’ve noticed how often someone mentions they’ve “just been diagnosed but I had symptoms the past 10 years”. Hmmm…10 years. Interesting.
    I’ve rambled, babbled. Thank you again Devin. It’s a wonderful thing to have a purpose and you most certainly do. The ripple effect you make goes so much further than you’ve probably ever imagined. God bless you and Ferdinand.

  • kellyhenson
    2 years ago

    Devin, I’m brand new to this site, but I have really enjoyed reading your stories! I’ve found them to be very helpful. Thank you so much!!

  • Nancy W
    2 years ago

    My 13 year anniversary of diagnosis is Nov 24. As humans, we are all prone to comparisons. I had to stop working after 4 years but still have invisible symptoms. But, I still am prone to checking what others are saying and thinking am I better or worse than they are.

    A friend told me that she told a newly diagnosed person about me and said I was “Doing great.” Yep, we are all different. I am doing what I can, but MS is still a permanent concern in my life.

  • 2ah3lsq
    2 years ago

    I was diagnosed in 11/2006 and had that initial exacerbation and another in 2007 then I was literally pretty much symptom free til 4/2014. I felt great no symptoms really, worked full time, I was a single mom with 2 children and an active social life. Came of the DMD’s by my choice because of the flu like symptoms weekly that was the only symptoms I had why take meds that make me feel bad when I feel great otherwise. Yeah well that came back to bite me in the rear 4/2014 when I had a relapse that put me out of work luckily I had STD ins thru work. It was really tough I could not drive for 4 months, had to do 4 months of OT & PT to get only partially back to where I was before physically, cognitively, and emotionally. That was a HARD pill to swallow! I had permanent damage that I may have hurried along by my choice to discontinue my DMD. I tried going back to work 15-20 hours a week in mid 11/2014 and that was pure hell. To say it was a struggle is an understatement. I was so exhausted I slept any time I was at home. My son was on his own by then and I had to break my lease and move back in with my mother because I could not afford my rent, utilities, etc. on part time hours and she had to take my daughter to school, do homework with her, cook dinner, etc. because I was literally in the bed all the time when I was not at work. In 4/2015 the 4 doctors all GP’s had been observing me and had picked up on lots of cognitive issues that were causing me to make some pretty serious errors doing my job and they determined they thought I was permantley disabled and had to let me go. Luckily they were very supportive and wrote letters to the judge on mu behalf in order to help me get SSDI which took 2 years. To be 37 and not able to work is another HARD pill to swallow. I have not been symptom free since that relapse. I am currently recovering from a relapse that began in late 8/2017 and still have a long way to go. I am about to hit my 11th since diagnosis and my life has been a roller coaster to say the least. I don’t consider myself negative. I live for the moment for the day. I appreciate the simple things and the small stuff alot more now. I push thru each day with whatever it throws at me and I pray thru everyday too. None of our stories are the same but we all have one thing that is the same we are all fighting a mean, nasty, unfair, and uninvited monster we call MS. We may do it differently but we are all fighting the same battle. I applaud those who still have so much positivity keep it as long as you can. Use it to inspire others. Those of us who are at the next phase as I call it we are not negative we are just all realizing each of our own “new normals” which is not what we asked for or wanted but we are all dealing the best that we can. Look at those who are newer to this than us as the ones who need to here our stories , our truths, our coping skills, and our wisdom abut our common enemy the most and try to be open and honest but also try to be as postive as we can. We cannot change our situations but how we react to our sitiuaton makes all the difference and that is up to us. Prayers for all my MS’ers and keep your smile even on the worst days let that be your hope your sanity.

  • trish444
    2 years ago

    I have PPMS for the first 10 years, i was diagnosed early, i managed however as things get more difficult it is starting to show in my ability to cope thanks for writing this

    Patricia

  • watergir1
    2 years ago

    Devin, I like how you write. So many of your articles put words to feelings that I have trouble expressing, even inside my head! I thought you did a good job emphasizing ‘Not all, but many’ and ‘Everyone’s ms is different’. I wish I had a more positive attitude about life, but ms is not to blame for all of that. As several have commented, just getting older has something to do with it.

  • Debbie Gu3
    2 years ago

    Devin – Let me say that I have enjoyed reading articles that you wrote and commented on one or two of them, maybe more. But when I read “The Differences With MS…” it gave me cause to defend the attitude I take, why I take it and remind you of what my MS has been like so far in my 7 year journey.

    I know you were talking about me when you mentioned the part about “MS doesn’t have me” because in a previous comment about one of your articles I used those exact words. My real hello from MS was transverse Myelitis before diagnosis, the damage was slow and steady over about a seven-day period. I had no idea of what was going on and when all was said and done, lost sensory in entire left arm, limited sensory in lower extremities which have never improved; this happened in April 2010.

    Anyway, after I got my definitive diagnosis just two months later in June with 1) CSF fluid showing 13 Oligoclonal Bands; 2) lesions in brain and 3) lesion in spinal canal. I have never, ever been the same physically since before I had MS; something that sounds like you were fortunate enough not to have happen until after ten years into your MS journey.

    Even after multiple relapses where physical damage may end up being permanent, I still keep the same positive attitude I’ve always had because that’s who I am. I treat my life like a football game plan, always subject to change, with audibles called when necessary. In my first four years I tried three other MS treatments before finally finding Aubagio, which has been a big life changer for me because since starting this medication I haven’t had any relapses for over three years.

    I really believe that even as the years go by that my feelings won’t change; that I will firmly believe and live by “I have MS it doesn’t have me” motto as well as continue to have my life game plan. Attitude affects how a person’s life with MS can go.

  • Devin Garlit moderator author
    2 years ago

    Thank you Debbie Gu3. I most certainly was not speaking about you, “MS doesn’t have me” is a longtime popular slogan, it’s on t-shirts, bracelets, and been around for a very, very long time. There is no need to defend anything!

  • MSandLivingLife
    2 years ago

    Devin Thanks for sharing your insight. Being diagnosed with RRMS 7 years ago now, I do see this happening when reading this out there on the Internet. I know I tend to try and keep a positive outlook. I have been on DMT which has been working for me. As I have no progression and no new lesions with my Multiple Sclerosis. I must admit, the thoughts of what if I do start to progress, lurk deep in my mind. Especially when new symptoms appear and take some time to disappear. Sometimes returning. I do know everyone’s MS is different but so similar in many ways. All we can do is stay as active and positive as we can and help support those of us that are also working through changes we never asked for.

    Keep writing, I do enjoy reading your articles.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much MSandLivingLife! Very happy to hear you are doing well! Appreciate you taking the time to read and comment. I look at anything I write as the start of a conversation and always hope that others will chime in with their experiences!

  • pippin
    2 years ago

    Interesting article. I was diagnosed 26 years ago, all I’ve heard is: expect a long decline. Nobody ever said things could go on hold? Now, yes I took Avonex for years, then Tysabri, just stopped Gilenya. I’m not taking anything now, I haven’t had any active MS lesions on MRIs in years. Is this because I started exercising and eating vegetarian? Nobody every said MS staying in remission was ever an option. Now, I have felt some odd things lately that I think may have been an exacerbation, but it just faded out and stopped and never got bad.

  • Devin Garlit moderator author
    2 years ago

    Thank you 1afrx2y. MS is a disease we don’t really know enough about. It’s also very much an individual battle. While there may be similarities among many of us, others have a completely different course for reasons no one understands.

  • PK
    2 years ago

    aaosnana, thank you. there is so little mentioned on any MS chat site about PPMS. I was diagnosed about 18 months ago with MS, PPMS right out of the gate. i read all these articles and stories about people with relapsing MS and think, wow i wish i had that. i went from a slight drop foot and numbing left arm to a cane, to a walker to a scooter in a 9 month time frame. no i don’t wish MS of any one, but everyone with MS should realize that all MS is progressive. so do what you can do today, tomorrow it could be gone, yes it happens that fast. learn your limits, live your life as near as you can the way it was pre-ms. MS is just change in routine, not a death sentence. i’m still accepting my new limitations, but i will adjust. it may cost me a friend or 2 maybe even a bruise or 5 but i will go on be me.

  • Shelley D.
    2 years ago

    Thank you for being REAL, Devin! I have had MS for 24 years now. For a long time (and still sometimes) I feel I have no right to feel sorry or depressed, because so much of what is out there is that “ms doesn’t have me” propaganda! Last year while I was fighting a losing battle with transitioning to a wheelchair, my neurologist told me “Oh, most people don’t get that bad!” I wanted to scream “I Well, what about those that do!?!?” Your honesty and realistic perspective is good therapy! Keep up the great work! MANY THANKS!!

  • Devin Garlit moderator author
    2 years ago

    Thank you PK! I know this article may have scared some people, which was not my intention. There are many people who have had MS for a while or have progressive MS and I feel it’s important to point those things out. There are a lot of stories out there about people “conquering” their MS or going through times with no trouble. That’s just not everyone’s reality and I wanted to point that out and how it can make some people a little upset. You are 100% right in the way you are dealing with it. MS is about adapting, it’s about making changes, it’s about trial and error. You can still live a great life if you recognize that and are willing to do it. I’ve always found that accepting MS and rolling with the punches has fared better for me than trying to deny it!

  • Marie T
    2 years ago

    Devin
    Thank you for your article. I was diagnosed 2 1/2 years ago at age 61. But I had been looking for a diagnosis for 8 years. I have tried to keep the attitude “it is what it is” And adjust my life accordingly. I retired at 62 and try to keep busy. I use an AFO with a cane and a scooter for shopping and distances. My husband and I just moved closer to our oldest daughter and grandchildren and are enjoying the increased activity. When I need to rest, I do. When I can help, I do.
    I think newly diagnosed people need to optimistic about their future as everyone is different. And who knows what research and treatment is around the corner? I am still optimistic that something will help all MS people!

  • Devin Garlit moderator author
    2 years ago

    Thank you Marie T! I agree, it is most certainly a time to be optimistic. I was merely trying to recognize those that can get a little frustrated with it. But this is a great time for the MS community, there are new advances and medications coming out all the time. It’s a time of hope!

  • VexedOff
    2 years ago

    We can track my disease back to my teens, though I wasn’t diagnosed until 2008.

    I love.your skepticism for ‘relapsing-remitting’ LOL. I haven’t ever ‘remitted’, certainly not more than 50%, from a relapse. I appreciate your observations about the accumulation of damage as well, for it’s truth.

    I feel for newly diagnosed folks, and I feel like it might have been better to gear this article for us who are over the ten year mark.

    I have a FB page called “MSing Around’ where I encourage newly diagnosed to contact me so I can help them learn, support them, teach them, and just be a friend since really, only MSers truly understand, whenever thet were diagnosed. I lost one of my newly diagnosed earlier this year. He was raked over the coals by his MS, as tends to happen with men in my experience. He had an enormous weight on his shoulders, large family.to support. He shot himself in the chest.
    Such are the unpleasant realities of MS, a point you made eloquently Devin.

    Newly diagnosed folks SHOULD stay positive (you in no way indicated they shouldn’t) as they may have access to better therapies and maybe even a cure in their lifetime.

    I personally stay off the cure wagon and just try to live each day the best I can. I gave up the pharmaceutical ‘therapies’ a few years ago as they made me sicker and never prevented a damn thing.

    I’ve made great strides with medicinal cannbis instead. I can’t work much, ok very little….Oh ok mostly not at all LOL…. but my quality of life (I actually have one now lol) is so much better.

    I encourage all who have access to check out medicinal cannbis, it helps in various forms, and it doesn’t make you feel worse.

    As for newly diagnosed folks……If those of us who have beem living with this over ten years seem negative, we actually aren’t. The frank proof being we are still alive. Some opt out of this life because of this disease. But those of us who haven’t, well we are ‘tired’ and have learned to adopt a very realistic and practical view of life with MS so that we can continue putting one foot in front of the other.

    Thanks Devin for the article, I enjoyed your writing and point of view, and opinions 🙂 <3

  • Dianaburke
    2 years ago

    I can really relate to you! Right now I can’t remember why! My recall is gone!!!! Thanks for your input!

  • aaosnana
    2 years ago

    I can definitely relate to your article! It took over 20 years of having symptoms before I was diagnosed with PPMS. A big part of the reason it took so long was what I call my “Cleopatra Complex”: I was (am?) the “Queen of Denial” that anything was wrong when I got the numbness, tingling, falls, fatigue, etc. When I was diagnosed 8 years ago, I was still able to walk (not pretty, but without a cane) and my go to theme song was “Ain’t Nothin’ Gonna Break My Stride.” A couple years later I began using a cane and the song became “The Ant Keep Marching On and On”. I now use a walker and sometimes a wheelchair and song has become “Slip Sliding Away”. I’m not as pessimistic as the songs may make it appear. I still stay active – it’s just different now. And, everyone has their own problems to deal with. Anyone who lives to a ripe old age is going to have more of their own variety of problems to cope with. MS just presents us with our own at an earlier age. While I realize I can’t do everything I used to do an/or want to do, I find I’m happier if I try to focus on the things I can do and find new interests I can still do. And I so agree that it’s important not to put off the things that are really important to you!
    A statement that really resonates with me: “The fact you may try and fail at something pales into insignificance when you realize you may never have a chance to try.” Thanks for your post!

  • Devin Garlit moderator author
    2 years ago

    Thank you aaosnana! I completely agree! Progression doesn’t have to be a bad thing. MS is all about adapting. If you are willing to change and adapt and keep living, your life will be amazing, no matter what the disease throws at you!

  • Lisa
    2 years ago

    Interesting article. I am at the coming up on 19 year mark. I have been on one DMT or another since diagnosis, and, while I did choose to leave work in 2009, I have been very, very lucky. I am able to stay active even though I have had to modify the way I do things. My brain is definitely not what I want it to be. That is why I had to leave my job. Now, though, I read the experience of other veterans of this disease and I start to worry. I think I am probably not good at preparing for the worst because i simply don’t want to face what might happen.

  • Devin Garlit moderator author
    2 years ago

    Thank you Lisa! I’m sad to hear this article made some folks worry, that was most certainly not my intention. As I often say, we have to keep in mind that everyone has a different course in this disease. While I may be recognizing a particular sub-group of people in this article, that in no way means that this will be the case for everyone. We live in a time of great hope for MS, strides are being made on the research front all the time. This is most certainly a time to be optimistic, for all of us!

  • Nicatric
    2 years ago

    As as a newly diagnosed 33yr woman with MS, I have so many mixed feelings about this article. I have sought out the best care in my area for MS to “fight” this disease and with the best aresenal available. My doctors and I always speak with, what I think is, a healthy combination of being hopeful but also some of the challenges that may lie ahead. However, it’s still incredibly hard to hear these MSers that have had this for a long time saying those newly diagnosed have no idea what they’re in for and that the the words of encouragement/slogans are childish. Believe me, I am not nieve to the fact that I will probably have to stop working one day, maybe be in a wheelchair or maybe even die from complications of MS.

    In my case, I’ve been married for a couple years and always wanted children. Now I have to step back and essentially reevaluate my whole life plan. Do I want to have a baby now? According to everyone this 10 year mark seems to be when things start progressing and staying. Do I want to have a 10 year old that I cannot provide for or be a ‘regular’ mom to? According to you, my life will probably be difficult in 10 years, but with all the recent advancements and starting with therapy much earlier than those diagnosed 10 years ago, who’s to say things are going to suck in 10 years? Maybe nowadays it will be 20 years? Maybe 30? Maybe never? But I guess that’s being too optimistic.

    I’d rather listen to words of encouragement and yes, be that person that says “I have MS but MS doesn’t have me”. Everyone’s course of the disease is not the same and believe it is hurtful to trample over those newely diagnosed saying they have no idea. Criticize me all you want but let us newly diagnosed folks be optimistic, work harder and get healthier so if this disease decides to make a turn on us, we’ll be in the best metal and physical shape we can be in to “fight” back.

  • Devin Garlit moderator author
    2 years ago

    Thank you Nicatric, I hope you are well. I am glad you are optimistic, you have every reason to be. This article is no way a condemnation of people being optimistic. Some people, particularly those who’ve had the disease a while, take some relief in hearing another side. There are many, many, many positive takes out there. So many that it can make some people feel bad, like failures. As I said in the article, it’s important for both sides to recognize this. In no way, did I mention that it’s bad to be optimistic.

  • DonnaFA moderator
    2 years ago

    Hi, Nicatric, we’re glad you’re here! I don’t think it’s possible to be too optimistic. Optimism is hope, and sometimes that’s the best thing the members of this community can do for each other – to remind each other to hold onto hope when things weigh heavy. “Our human compassion binds us the one to the other – not in pity or patronizingly, but as human beings who have learnt how to turn our common suffering into hope for the future.” -Nelson Mandela -Warmly, Donna (MultipleScerosis.net team)

  • lpoole
    2 years ago

    Hi Devin,
    I love reading your articles they are great and describe things so well from both sides. The most interesting to so far was your article on the Ten Year mark and after. I have had MS nearly all my life, since the age of 17 which happens to be 34 years ago. I could relate to this article so much. I hear the difference in responses to how people react to their take or dealing with MS. I find myself not being able to respond to questions about how I react to it for it has been a part of my life so long. Its adaptations I have made unconsciously along the way they are like second nature.
    Now being a former support group leader I will say that stay as active as you can, eat well and keep yourself knowledgeable on MS. Learn some how to accept that it will not go away so help yourself by learning the ways you can make things easier on yourself.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much lpoole! Really appreciate you reading and taking the time to share some of your story!

  • Polifax
    2 years ago

    Hi Devin, going on 18 years here. I spent the first 11 with my head in the sand and an attitude that I could still do anything and do it better. I am not sure I regret those years without a disease modifying drug. However I ended up in the hospital with Transverse Myelitis (due to a thoracic lesion) and went from nothing to Tysabri – then various drugs and now back to Tysabri. So MS definitely has me now. I am not sure of the studies but I would like to see them on spinal vs brain lesion and progression (I have both) but I can say personally my Neuro said spinal lesions are worse in terms of disability because well, there is not a lot of “real estate” in your spinal cord. My least favorite MS terms are “progressing/progression” (isn’t that word supposed to have a positive connection?) and the phrase “you have failed on XX medicine”. Shouldn’t that be the medicine failed me? Thanks for the post.

  • Devin Garlit moderator author
    2 years ago

    Thank you Polifax! I’d love to see some stats on spine vs brain lesions and progression too. I’ll be sure to look into that. Totally agree on the “you have failed” phrase, that needs to be changed!

  • EmYung
    2 years ago

    I read this and felt so good after reading it. I don’t often hear this part of the narrative, I live it. I hear the “I have MS. MS doesn’t have me! And may even I said that once, but I sure can’t remember it. I’ve been having such hard time this year, I think I foolishly asked one time…what do you say to those who MS does have? I don’t remember an answer. I haven’t accepted or maybe even understood that in year 12…this might be my new normal. And if it is – ok.
    Some days MS has me.
    And that’s ok because I have MS.
    Thank you for putting me in touch with feelings I knew were there, but scared to show their faces. It is really unpopular to tell people to be quiet when they are explaining to you how eating apples will cure you. But it isn’t impossible to say thank you and keep on moving. We can’t rob people of their hope, even if ours is getting harder to find. You just helped me to understand why I’ve been feeling as I have for the past few years now. Thank you.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much EmYung! We so often here about the other side of things. We can still have hope, and hopefully do, but it’s also ok to acknowledge reality. It’s ok to have MS and for it to be tough sometimes. For me personally, I’ve found accepting it, admitting it, and treating as just one aspect of my life has been very helpful.

  • Sue
    2 years ago

    Thanks Devin. I used to be a very energetic optimist. I was sad that my older brother got progressive m s in his 20’s.. When I was 31 with a 6 month old, I saw a yellow aura. It was scary and I went to the neurologist. This was 1983, but I did have a brother who had just entered a nursing home in diapers, 10 years earlier he had been working in a law office, a jazz pianist and poet.
    I was in fine health in 1983, no other symptoms and no other family members with m s. There were no MRI’s and no other symptom. A brief course of steroids and I was shaken, but encouraged by the m s specialist who told me that it was something to keep a eye, but not to worry. For the next 3 years I felt fine, especially after beomg examined and given the numbs up. I continued to be fine for he next 17 years.
    At the end of work on a particularly tiring day , I stepped into a pot hole and heard a tiny crack in my foot. X-rays showed a hairline fracture. I wore an air cast for 6 weeks. I started to feel numbness and tingling in my thighs, but I was walking fine. My brother had died in a comA 15 years earlier.
    The podiatrist had heard my history, but i passed the EEG with flying colors. Within another two months I couldn’t feel the bottoms of my feet. I was working full time, driving a teenager from place to place walking 2 miles a day and swimming on the week end.
    At this point there were MRI’s which suggested a “benign m s”.
    HAHA! I started on Avonex and inched my way through to Tysabri, even returning for Gilenya. I’ve had plasmapheresis and Ocrevus.
    No, I’m not Susie Sunshine, any more. I drive my powerchair to physical therapy a couple times a week so that grabbing onto the walker with a safety belt around my waist I can drag myself 20 feet . Not really myself though. I can drive my chair with one hand as long as there is a person to hold the door.for me.
    Occasionally I smile as my aide cuts my meat and gives me a glass with a straw in it. I’ve tried doctors, hospitals physical therapists acupuncturists, social workers, swimming etc. mS definitely has me. I have a husband, 35 year old daughter, pension, health and long term health insurance, but I really want to get my own glass of water.
    I cringe when m s organizations give inspirational seminars.
    I pray that some day there will be a cure. As a victim of m s, you have to get out there and do itt. Maybe you’ll have another chance or may be this is it. I try anything that the medical people offer me because I really don’t want live to be 117 in more diminishied capacity..
    One last thing, I don’t do diets. I eat reasonsable amounts of many different things. I keep on asking new specialists and they have all said that I should limit salt and eat healthy amounts of fresh food. According to the 8 doctors I’ve seen in 35 years, Paleo, Wahls, gluten free, vegetarian,etc. are only anecdotally effective, not scientifically.
    , ,

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Sue! Your story is like so many. And like you, I cringe with the inspirational seminars and posts. I understand it, I do, and I’m happy that works for some people (though it often seems to work for those who haven’t progressed so far). The reality for me though, is that inspiring words don’t help me. Knowing that others have had it tough, but keep on going, that helps me. Knowing I’m not alone and knowing that I’ve come this far, that helps me. Oh, and I agree about diets, as much as people want them to work, in like 40 years, there is no scientific proof.

  • bruscor
    2 years ago

    Interestingly, I have been diagnosed since August 2010, so a little over 7 years, but I had my first “relapse” in 1998 but was not diagnosed. I had optic neuritis; the ophthalmologist thought (correctly) that it could be a symptom of MS. However, he sent me for a catscan, not an MRI, and did not see any lesions. Fast forward to 2010, and I had another relapse and was property diagnosed after an MRI and a spinal tap. So I guess I have had this disease for coming on 20 years. Oh, snap!
    I was not on a DMT until 2010 and took a 2 year break in order to get pregnant with my daughter and nurse her.
    Personally, I think my break from treatment left me open to progression as my cognitive function worsened in the last 5 years. On the other hand, I fall into the “but you look so good” category and have not had any major physical issues; only tingling/numbness as of late. I exercise ALL the time and swear by it. I think yoga has helped me improve my balance – and, of course, relax and strengthen not only my body but my mind. I also do aerobic activity, walk around 2 miles and do weight training in an exercise class. I say to myself (when not really wanting to exercise), “use it or lose it!” So I push thru it and treat it as my job. I refuse to be taken down by this condition.

  • Devin Garlit moderator author
    2 years ago

    Thank you bruscor! Your diagnosis story is so common. Even I had a catscan and not MRI at first, which led to a delayed diagnosis (despite two other people in my family having MS). Happy to hear you are doing well!

  • kunukia
    2 years ago

    I am at the 12 and some months mark. I am grateful that I am pretty stable. I have balance issues and use a cane, I am sometimes relatively pain free, but it sneaks up and slams me when I don’t expect it. Weariness, yes indeed, all the time. Mental ‘hiccups’, hand tremors, check. I am pleased that I have enough strength and mobility to walk my two rambunctious, 65 ponds each, dogs. They are aging, and I definitely will get smaller dogs next time around, against the day that I am less strong and mobile.
    Thank God for my adult kids who help out with household issues that are hard for me. Who would have thought 15 years ago, that I would be too afraid to climb on a chair to change a light bulb, in case I fell.

  • Devin Garlit moderator author
    2 years ago

    Thank you kunukia! My pup is a small guy now, but I have two larger dogs who stay at my parent’s house (where they have a massive yard). It was tough when I realzied I couldn’t walk the big guys. It was a perfect chance to rescue an small and much older dog though. He’s 12, has two teeth, and is a bit slower than he once was. Just like me. Works out well!

  • corgi9
    2 years ago

    70 years old. Diagnosed in 1979. Been all over the place with the MS but still walking, now with a cane and can’t go that far without resting so no trips to Italy for me !. Stopped taking any medicine for my MS about 20 years ago.. just put up with the symptoms…you all well know what they are….tingling..hot..cold…tired…foot drop…weakness..yada yada yada….my choice but I won’t inject and choose to avoid the side effects from all the DMDs…. Now down to the subject matter. I think part of the difference between us and the newly diagnosed and their Outlook is the fact that we are older, can see our mortality, have seen our past slip away by what MS has robbed us of and at this stage are more aware of the trials of life. We seen more to make us a bit more “cranky” than when we were Young MSers. It’s part of the “circle of life”

  • Devin Garlit moderator author
    2 years ago

    Thank you corgi9! All very good points, and at some point happen regardless of diseases, it truly is the circle of life.

  • Becca ru
    2 years ago

    I hit the 13 year mark this year! At the 10 year mark I decided working full time was just to much for my fatigue levels. I was taking months off at a time to recoup every time the seasons changed (in Michigan that is at least 2x a year). My Neurologist was just waiting for me to hit my breaking point. I am less stressed and can sleep when I need to know which has helped a lot! Life goes on and I was replaceable at my job so I felt no guilt!!

  • Jan
    2 years ago

    Hi Becca, I join you in hitting Year 13–this month, actually. And I’d have to agree with Devin regarding comments about perspective. Initially, I had heard about MS but wasn’t familiar with it. I could still figure skate for three years (losing some red color saturation during a workout wasn’t a big deal), snowshoe when on vacation, jump down from a rock. And joyfully lived life in ignorant denial bliss and positivity.

    Now? I use a rollator nearly always and aim to more often move back from a Mart Cart to hanging onto a regular grocery cart to combat edema in my feet. Sigh. No MS meds ever (I’m very meds-sensitive), yet have dealt with plenty of stress, both related to and unrelated to MS. Still generally positive of spirit, though (it helps).

    So yes, I get why Mayo would initially make no predictions until Year 5; and oh, by the way, Year 10 is an even better predictor. (Not what I wanted to hear at Year 1, and then somewhat confusing, too). Everyone is likely different, but we who have dealt with this likely “get it.”

    It still takes me aback at times. But also not being age 43 anymore does, too.

  • Devin Garlit moderator author
    2 years ago

    Thank you Becca ru! Sounds like you stopped working at the best time. A lot can be learned from that and being proactive with that decision!

  • potter
    2 years ago

    I am about to hit my 10 year mark, I am doing pretty well but I can’t imagine running or playing a sport. I feel pretty lucky that I can still walk long enough to do my grocery shopping. When I am posting on the forum I try to be upbeat and not complain about my condition. When the newbies post a “You Can Do It”, I don’t take it to heart they are like children that have a lot to learn. Potter

  • Devin Garlit moderator author
    2 years ago

    Thank you potter!

  • Azjackie
    2 years ago

    I completely agree. I’m sure with all illnesses over time all people wear down. They get tired of hearing “you can do this” or I’m sorry I wish I could help”.

    If someone is feeling great or not the effects of others I could go for not hearing about it. I think it triggers jealousy, more stress, and some frustration.

  • Devin Garlit moderator author
    2 years ago

    Thank you Azjackie! I think you are right, it most definitely conjures up feelings of jealousy and stress too!

  • Anonymouse
    2 years ago

    Good article! I share your frustration with the misleading term “relapsing-remitting.”

  • Dianaburke
    2 years ago

    RRMS ads are so misleading! I cringe every time I see them!

  • Devin Garlit moderator author
    2 years ago

    Thank you Anonymouse!

  • JAWilson
    2 years ago

    At the 12 year mark, and agree that my perspective is much different now than in those first few years. I have learned that adapting to near constant change is more realistic than the cheers of, “You can fight this!,” that I heard so often early on. I have also learned to seize the day when I am feeling capable and hit those bucket list items while I still can, instead of thinking, “I’ll get that hiking in the Scottish highlands trip done in the future.” It may sound negative to newbs, but I very likely WON’T be able to do those things in the future. I know that now having relearned to walk 3 times, and having accrued a whole host of issues that persist when I am “in remission.”

    I find myself afraid to talk with the newly diagnosed that are unaware of how the disease is going to affect them even while they are not relapsing. Any tips for being real without bumming people out?

  • Devin Garlit moderator author
    2 years ago

    Thank you JAWilson! It really is adapting more than fighting. That’s something I wish I could better convey to the newly diagnosed, because I think the while the mindset of “fighting” the diseases seems great, it can lead to some profound disappointment down the line. I think it’s better to try to realize that you’re tough and you’ll handle no matter what comes down the line. You can adapt and can live with MS. MS doesn’t have to be a dirty and scary word, it’s ok if you fail to fight it, as long as you adapt to it. It’s hard not to bum people out, and I’m sure my writing can do often do that. At the same time, I try to be real and explain that, yeah, things might change, but if you adapt and change with them, you can still live a fantastic life.

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