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).
What I wish I knew when I found out I had MS
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 symptoms are much more than physical
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 someday. 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 scariest 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 an 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 swings, depression, 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.
It’s easier to find a good mechanic than a good neurologist
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.
Disease-modifying drugs and medications
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 there (and a whole lot more now than when I was diagnosed).
It can take a long time to find the right MS treatment for you
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.
My biggest MS regret
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 might lose some relationships
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 is a huge problem
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.
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.
The disease never truly "remits"
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 my attitudes about MS when I was first diagnosed. I probably didn’t take it seriously enough when I was younger.
Damage builds up over time
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.
Remember: we're all different
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 judgments. I thank you all for reading and continuing to spread awareness!
How many specialists did you see before finding "The One"?