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

View Comments (54)
  • trilin16
    4 months 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
    1 year 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!

  • PetieJ
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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!

  • 1afrx2y
    1 year 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
    1 year 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
    1 year 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.
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year ago

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

  • aaosnana
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year ago

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

  • Polifax
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    8 months 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
    1 year 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
    1 year 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
    1 year ago

    Thank you potter!

  • Azjackie
    1 year 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
    1 year ago

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

  • Anonymouse
    1 year ago

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

  • Dianaburke
    1 year ago

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

  • Devin Garlit moderator author
    1 year ago

    Thank you Anonymouse!

  • JAWilson
    1 year 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
    1 year 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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