Nearly 17 Years With MS: Some Things I Wish I Knew When I Was Diagnosed

Nearly 17 Years With MS: Some Things I Wish I Knew When I Was Diagnosed

Wow, times sure flies as you get older, doesn’t it?  As I write this, I’ve been diagnosed with Multiple Sclerosis for 16 years (actually, closer to 17, my MSiversary is in February).  That’s a significant period of time, so I thought it’d be interesting to look back and mention some things that I learned along the way and wish I knew at the time.  While I’ve been diagnosed for a long time, I want to mention that my grandfather also had MS, and some of my thoughts here are not only from my experience but also from witnessing his.  As always, let me first remind you all that those of us with Multiple Sclerosis are all different.  I firmly believe we all need to find out what works for each of us on our own.  That said, I’ve always found it interesting to see what folks would have done differently or at least what they wish they knew.  So I hope this can be of some benefit to someone.

MS causes much more than physical problems – I was no stranger to MS, my grandfather had it and I sadly witnessed his decline.  Maybe because of this, I very much thought of Multiple Sclerosis as a disease that wreaks havoc on the body but that it caused mostly physical symptoms.  I expected to need a cane and probably be in a wheelchair some day.  I thought for a long time that my chosen career path (as a software engineer) would let me continue to work for a significant period of time regardless of progression.  I thought, “ok, well even if I’m in a wheelchair, I can still use my brain, I’ll be fine.  I mean, Stephen Hawking is in a wheelchair and he’s still sharp, so I’d be ok.”  I was very wrong.  I had no idea that MS would cause so many cognitive problems.  I had no idea that I’d have times where my thinking could not be focused.  That everything would be a jumble and hazy in my head.  I had no idea that the disease would have the effect that it has on my memory.  These are still the most scary issues I deal with and I never realized how big of an issue they could be.

Emotional issues are another big problem that I never expected.  Yes, getting a incurable disease should seem like a catalyst for emotional trouble, but I never expected the kind of problems the disease itself has brought, like mood swingsdepression, and having bad bouts of sensory overload.

I’m going to include pain here too.  I never thought of Multiple Sclerosis as a painful disease.  Boy was I wrong.  Not all of us, but many of us experience some pretty awful pain.  It’s rough and it can change you.  Your tolerance will go up but that won’t make it any easier on you.

Not all doctors are equal – Of course I knew that some doctors are better than others, but I never expected to see the massive disparity between physicians that I have seen over my past 16 years with this disease.  My opinion of most doctors at this point is that they are no more than mechanics for the body.  Trust me, it’s easier to find a good mechanic than a good neurologist.  The biggest point I want to make here is that having Multiple Sclerosis means you have to advocate for yourself.  You can never assume your doctors know what they are talking about.  Question them and be willing to switch to a new neurologist.  Always seek more than one opinion.  There is no sitting back and being complacent with MS, you have to advocate and work for yourself.

MS Treatment is a lot of trial and error – Going into my battle with this disease, I thought, “ok, they must know what they are doing, everyone must be on one or two drugs that work for everyone and that’s it.”  After all, I know other diseases had a standard treatment (Young me was probably thinking of cancer and chemo).  That’s not the case at all, there are a bunch of medications out (and a whole lot more now than when I was diagnosed).  The thing about Disease Modifying Drugs and medications that are used for symptoms is that some work for some people and some work for others.  After taking my first DMD and then needing to switch (and I’ve switched yet again since then), I was confused, I was depressed, it worked for a while and then it stopped, why did it stop working, why did I relapse?  Well, what I learned was that this is actually pretty common.  Many of us with MS have to try out many different medications before we find one that’s effective or even has tolerable side effects.  It can take a long time before you find what works well for you.

Not taking a DMD at one point was my biggest mistake – This is one that sadly angers some people.  As I said in the beginning, to each their own, everyone needs to find a treatment that works for them.  My biggest MS regret is going a stretch of time without taking a disease modifying medication.  I went a time without insurance and so had trouble getting my medication.  I also bought into the natural approach a bit too much.  I was extremely healthy for a big stretch of time, no relapses and I felt great.  The thing I learned the hard way is that just because you seem to have no symptoms, no visible lesions on MRIs, and you feel great doesn’t mean the disease isn’t still progressing.  Sorry, but there is no proven science that diet and exercise alone can fix MS.  I’ll tell you, I felt great too and seemed to do well, but that didn’t stop the disease beneath the surface.  I’m on disability now, and I’ll always think I could have staved that off longer had I not had that period when I didn’t take a DMD.  My view is the same as most doctors: diet and exercise are very important, and living a healthy lifestyle is very important, but they alone will not stop disease progression.

The need for patience – I never knew how much patience having MS would require of me.  I was fairly young when diagnosed so this is something I had to learn.  Patience is needed when figuring out what medications work, it takes time.  Patience is also needed during a relapse or even during a bad day.  Some days aren’t going to go well, but you need to be patient with life and say that’s ok, things will get better soon. You just have to be patient and wait it all out, while trying not to get too discouraged. Patience is also needed in the waiting room while sitting and awaiting the many doctor’s appointments that we have to endure!

It takes more than a neurologist – One thing that wasn’t recommended to me early on, and perhaps this is because it was so long ago, was the need to see specialists other than my neurologists.  By this, I mean physical therapists, occupational therapists, speech therapists, and even psychologists/counselors.  Taking a disease modifying drug and living a healthy lifestyle isn’t enough.  Seeking out specialists that can help you is very important.  More and more neurologists are beginning to recommend these types of professionals for a more comprehensive approach to treatment.  This sounds like a lot, and it can be depending on your symptoms, but seeing these specialists can be extremely helpful.

You’re going to lose friends and maybe significant others – It sucks, but it’s true.  Having MS is tough on relationships, friendship or otherwise.  The need to often cancel plans, not always being able to do the same activities, suddenly having different priorities, mood swings, etc.  are all potential reasons why this can happen.  As much as I hate to admit it, for many of us, life significantly changes.  Some relationships can last through it and some can’t.  Trust me, it’s a lot better for you if you can simply accept that and let some of those relationships end.  I know that this is not easy.  Try to resist the urge to get angry over it, that doesn’t help anyone.  MS can be a very lonely disease, but trust me when I say the people that you do stay close with will be very special.  MS can easily eliminate the not-so-great people in your life, and that’s a good thing.

Stress – Prior to and during my early years with MS, stress was not something that bothered me.  I welcomed it even.  I had several high stress jobs during that time and relished it.  My work always improved.  If something didn’t go according to plan, no problem.  As time went on, stress has become a huge problem for me.  The smallest of stressors can reduce my body to mush.  It can bring up every symptom I’ve ever had.  One day I need to write an entire article about stress and what it’s done to me.  For now though, I’ll say that I never expected stress would be such a big problem for me and had I known this ahead of time, I might have planned a few things differently.

Financial Planning – I think most people with chronic illness might mention that they wish they had better prepared for their future.  I had a very well paying career and it’s easy to look back and say, I should have saved more.  I did put money into a 401k starting very early on and it was extremely helpful.  I’m not sure I could have survived without it.  Still, I think you always wish you had put some more away and knowing what I know now, I absolutely would have.

Relapses are not the only problem time – When diagnosed, I was categorized as Relapsing-Remitting.  There are some MS specialists who are calling to change the name of Relapsing-Remitting MS.  They want to do this because it really isn’t accurate.  While this class of MS does feature relapses when things get extraordinarily worse, the disease itself never truly remits.  Even if it doesn’t seem active, it’s still there, quiet and working behind the scenes.  A lot of folks make medication choices based on thinking that the disease isn’t really active during the time between relapses.  That’s incorrect and this thinking affected the my attitudes about MS when I was first diagnosed.  I probably didn’t take it seriously enough when I was younger.

Time adds up – My first 10 or so years with MS, things were hard but I always felt like after a relapse, I’d recover and be doing well.  I was still athletic, I still did everything I wanted.  I know now that as I had the disease, damage continued to build up.  Now, close to 17 years after diagnosis, I haven’t had a relapse in a couple of years but the damage done during those years is there.  All of my issues that I had along the way are now more common and more prevalent.  Some are symptoms I can try to treat but for the most part, there is no fixing them.  Even if MS were cured today, I would still have these issues (I don’t need a cure as much as I need a way for them to regrow myelin, that all-important insulation around our nerves that MS destroys).  During that first decade with the disease, maybe because I was young, I didn’t realize the damage that was being done along the way, regardless of how I felt.

Thanks everyone, again, these are things I wish I knew back when I was diagnosed and during the early years of my disease.  Remember that we are all snowflakes, we are all different.  I in no way ever try to tell people what to do, I am simply laying out my experiences for people to see and make their own judgements.  I thank you all for reading and continuing to spread awareness!

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 (25)
  • bethybright
    9 months ago

    Great piece, Devin. Nicely done.

  • Devin Garlit moderator author
    9 months ago

    Thanks so much bethybright!

  • Spratt
    2 years ago

    One of the best articles on MS I have read. Thanks for sharing.

  • Devin Garlit moderator author
    2 years ago

    Thank so much Spratt! I really appreciate that!

  • RitaMac
    2 years ago

    Searing, burning, pain. Yes that is it. I live with it daily and nothing seems to help. Suggestions?

  • Devin Garlit moderator author
    2 years ago

    Hi RitaMac, sorry to hear that you have to deal with that pain as well. I recommend seeing a pain specialist in addition to your MS specialist. I personally use a combination of cymbalta and medical marijuana to help with it.

  • vjwebb59
    2 years ago

    WOW. I also will have been diagnosed for 17 years next April and you just basically told it the way it is! There were a lot of things you mentioned that I wish I had known. I remember the first few years wondering what was the big deal with MS and heat everyone kept talking about. I was still outside in the summer playing golf – no problem. I started taking DM drugs from the beginning and have never stopped. However, after about the 3rd year and my first really major relapse, I started to get ‘it’. The thing that really gets me is that nobody tells you about the invisible parts of the disease – the memory loss, the fatigue, the fog, the fact that the overwhelming sense of noise, too many things happening at once, the confusion, etc. That started for me about 5 or 6 years ago and gets worse every year. I’m also beginning to find out that the frigid cold can get to me even more than the hot weather!

    Even after 17 years, I’m still RRMS (I’m very lucky). I do have a few physical problems but it seems like most of my MS you can’t see and that can be very frustrating because people without MS just can’t seem to understand that part of it.

    Only 1 thing I would add to your list of things you wish you had known(mainly because I really wish I had known this after my first major relapse that I still have leftover symptoms from to this day), is that when you do have a major flare-up, get some help as soon as possible. If at all possible, don’t wait for it to take 4-6 months to take care of itself. This is not medical advice, but 3-5 day IV steroid treatment, prednisone, even plasma exchange or whatever your neuro recommends to get you over it as soon as possible – do it. I don’t know if this happens with everyone, but for me the longer it takes to get over a major (by ‘major’ I mean you woke up one morning and couldn’t use your legs, optic neuritis, etc.) relapse, the less it seems to heal. I also wish I had known that after recovering from some relapses, there would still be symptoms that don’t fully ‘recover’.

    Devin, I’ve been reading your posts for a while and I’ve never posted a comment but I just had to on this one! I commend you for keeping us informed and entertained at the same time! Keep up the good work!

  • Devin Garlit moderator author
    2 years ago

    Thanks so much vjwebb59! Very much appreciate you reading and sharing your thoughts! I 100% agree about taking action right away when you believe you are having a relapse. As rough as steroids can be, starting some IV solumedrol can make a massive difference! I’m very fortunate to have had some MS specialists that also believe that and would give me that encouragement. Thanks so much for mentioning that!

  • rnhviolin
    2 years ago

    This disease is so frustrating, feeling reasonable on day, horrible the next. Never quite knowing what to expect when I get out of bed. I am no longer scared by what I am going to find/feel. Unfortunately the one thing that is a given after 42 years of living with this disease, is I just don’t know, just try to keep moving and being upright.

  • Devin Garlit moderator author
    2 years ago

    Thank you rnhviolin. Our disease is very frustrating. The unpredictability of it is unbearable at times. Thank you for reading and sharing your thoughts, it’s very appreciated!

  • msstandsformoodswings
    2 years ago

    Very well said. I’ve had MS for 31 years and much of what Devin has said is quite familiar. The hardest thing for me to explain to friends and acquaintances is my (often) sudden need to stop engaging and seeking a place for “quiet time” in order to regain control of my thoughts and executive function. Sometimes I have to just blurt out, “I can’t think right now.”

    I never know when these “brain attacks” will happen, so I’ve become much more reluctant to leave my house – and that is not at all good for me physically or psychologically.

    I would love to hear from anyone who has found successful coping skills for this problem. Many thanks, and best wishes to all.

  • Devin Garlit moderator author
    2 years ago

    Thank you msstandsformoodswings. I too would love to hear how other people cope with this issue. Like you, I often have to excuse myself from a situation and find some quiet alone time. I try to educate people as much as possible that I need to do this, so it doesn’t seem so abrupt or weird. Thanks for sharing!

  • trloftus
    2 years ago

    Interesting observations. I think we all wish someone would have told us more in the beginning. Diagnosed with PPMS 2/1/2008, I tried Avonex for a month and Copaxone for over a year while my symptoms got worse and worse month to month. It wasn’t until I changed my diet and eliminated many foods that my decline stopped. I have since stopped all medications and have not seen any worsening of symptoms. However, total recovery has been elusive. PT is somewhat helpful but I am considering stem cells for nerve regrowth. Good luck Devin!

  • klsa
    2 years ago

    I’m sorry about everything you are going through. At the same time, my 15 year old was just diagnosed with RRMS, and I thought I was more hopeful for her future:(. She has so many plans and passions. She has no symptoms at the moment and you wouldn’t know she has MS. I feel like her future is over or bleak, after reading this and at 15, her life is just starting. She’s on tysabri and just had her second dose, guess MRI will tell…

  • Devin Garlit moderator author
    2 years ago

    Thank you klsa! There is absolutely no reason to feel bleak over her future, quite the opposite! She is young and starting treating early, which is the best possible situation. Many of my issues I believe would have been solved had my MS been caught earlier. 17 years ago, it was not as easy to diagnose. There was also not the amount and quality of medication now available (after being on Tysabri, I feel my life would have been drastically different had it been available to me when I was diagnosed). If there is ever a good time to get diagnosed, now is it. There is a tremendous amount of hope right now and a bright future. There are a lot of medication options with a lot more already in development and even in the testing phases. There is no cure, but for someone starting out with MS now, they are in a very good place!

  • pmm
    2 years ago

    “I had no idea that MS would cause so many cognitive problems. I had no idea that I’d have times where my thinking could not be focused. That everything would be a jumble and hazy in my head. I had no idea that the disease would have the effect that it has on my memory. These are still the most scary issues I deal with and I never realized how big of an issue they could be.”

    ^^ so. much. this.^^ From one person in a STEM career to another, cognitive issues are definitely the most scary for me, and my most persistent symptom (well, and fatigue … but the cognitive fog is almost like an extension of fatigue), and are probably responsible for my recent job “re-assignment” that has left me devastated beyond words.

  • Devin Garlit moderator author
    2 years ago

    Thank you pmm! I hate hearing it but at the same type I do feel some comfort in knowing someone else knows exactly how I feel!

  • norcal25
    2 years ago

    More than 17 years, too.

    More of this, less of that, but your depiction is so accurate! I did go without DMD for many years, that is a big regret!

    For the first 12 years of so, between relapses, I did not show physical symptoms. Looking back that was wasted time. I could have done many things; things I may not ever be able to do. Big regret!

    Not really a regret, but would have been so good if an MD, or anybody, were to force me to read your post, over and over…

  • Devin Garlit moderator author
    2 years ago

    Thank you norcal25!

  • JoyH
    2 years ago

    I’m coming up on my one year MSiversary (February as well), and I am still trying to figure out what MS means in my life. I have a hard time looking at myself as a “sick” person because I still feel ok for the most part (it’s all relative), but in all reality, I am sick. I’m learning how to navigate life with this disease, and I am so grateful for this sight, and others like it. It feels great to know I’m not alone in this, and that others “get it”. Thank you!!

  • Devin Garlit moderator author
    2 years ago

    Thank you JoyH! I have always felt that reading and talking to other people who experience the same things that you do is such a must. That feeling that someone else “gets it” can be so comforting! Thank you for reading and sharing your thoughts!

  • johnl
    2 years ago

    I would like to thank everyone here for their stories and comments. I am new here and here becouse the person that I am in love with has MS. From this site I have learned so much about this illness and am have a better understanding of it. Thank You All!

  • Devin Garlit moderator author
    2 years ago

    Thank you johnl! That’s really great you are reading up on things here for a loved one, that means so much!!!

  • Nancy W
    2 years ago

    I can really identify with MS causing more than physical problems. I was diagnosed 13 years ago next week. We all seem to remember our MSiversary, despite memory problems. Ironic, isn’t it. Anyway, I was talking to someone today about my MS limitations. If I am overtired or overheated, my brain turns to mush. I need my husband around when I attempt new activities that require exerting energy in public. He watches over me carefully and can tell when I will need help. So, I don’t attempt challenges like bus trips or museums, or traveling to new places unless he (or some other understanding relative )is with me. I call this problem, feeling MSy.

    When I feel like that, I need to find a quiet, comfortable place to rest. I can’t explain it in the moment, which is a big part of the problem. Today, as I was explaining this, someone said, “You mean, if you felt well enough to explain the problem, it wouldn’t be as big a problem? ” EXACTLY!

  • Devin Garlit moderator author
    2 years ago

    Thank you Nancy W! My wife has become pretty good at noticing when I’m starting to feel MSy too. Sometimes I think she can tell before I do!

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