I have multiple sclerosis, which some people call a “terrifying” disease. I try not to dwell on the fear, but I know that for some people, it definitely fits that definition. At times, it has even had scary moments for me as well, such as symptoms that were nearly impossible to distinguish from a stroke even for my doctors. Sometimes I temporarily lose my vision.
Yet if you want to help people like me, please don’t donate to the National MS Society.
This all came about because I saw an Instagram post earlier that a musician I like is raising money for MS because his aunt has it. I was really touched by that (although also scared that I have the kind of disease that would inspire people to have charity walks.) But then I saw that the money he was raising would go to the National MS Society. I don’t fault him because he’s trying to help, as most people involved with the National MS Society are.
But here’s why that’s the kind of help I don’t need: the National MS Society is all about compliance with the disease-modifying drugs (DMDs) like Ocrevus and Copaxone. None of those drugs are cures, though for how expensive they are, they should be.
I know there are exceptions to the rule, but I see scary outcomes still occurring even in most people who take those meds. It seems that the meds make people worse and more quickly. I was reading earlier today about a woman who was diagnosed with MS, took the drugs they recommended for her, and within five years she was unable to work anymore and had to take disability.
I may not be able to control the course of my illness, but I am doing my damnedest to avoid outcomes like total disability through sheer stubbornness and positive self-talk. I am telling myself that I just won’t ever become disabled.
I have a link to a study somewhere that I can’t find just now that says that mental attitude plays a major role in MS and disability. Specifically, they found that people who were more optimistic had a slower and less severe progression of the disease.
I don’t think anyone who knows me would describe me as having a positive attitude at all, but I am certainly trying to turn it around. And I honestly believe that my self-talk and my reassurances to myself that I’ll be okay are going to keep me well in the end.
If you read mainstream stuff about MS, of course it sounds terrifying. It sounds like you’re doomed. Add to that the substantial side effects of many of the disease-modifying drugs and it’s really no wonder that people end up filing for disability within just a couple years. I actually did file for it a couple years ago but cancelled my application before they could make a decision.
Fear and stress make MS pain much worse. And if you’re constantly surrounded by people talking about how bad their MS is (as is the case in most online support groups) it’s just going to ramp up that fear and stress.
Much like watching the news all day convinces you that the world is dangerous and you come to adopt that view, the same seems to be true with immersing yourself in the world of MS.
I know very few people who are active participants in MS communities, regularly seeing their neurologist and taking the recommended drugs, who are actually doing the same or better after five years. Most are doing much, much worse.
I supposedly have a very severe case of MS based on my MRIs and the number of bands in my spinal fluid. And it’s true that I’m marginally worse than I was five years ago. But I don’t have the side effects of any of the DMDs on top of it. When I feel like I’m getting worse, I just take naps and try to reduce my stress levels, eat better, and spend less time standing on my feet.
No, it’s possible that nothing will ever make me able to go back to walking around for five hours again. But at the same time, I’m convinced that my symptoms are manageable without the drugs. I do also believe that as I continue trying to get more exercise and improving my diet, I will likely see a reduction in the symptoms I do occasionally have.
I once read a quote from someone with MS who, like me, had opted not to take the DMDs. He said his advice for newly diagnosed people was to forget their diagnosis and focus on trying to clean up their lifestyle in every way. And that’s what I’m trying to do, too, even if my changes are gradual.
I’m convinced there’s a way to beat this, or at least to manage it, and I’m going to write about that on yet another blog site. I just don’t believe the drugs work — but I’m also not resigning myself to my illness, either. I’ve been diagnosed for five years and had symptoms for 16 years. For how bad my MRI supposedly looks, I’m actually doing pretty damn well. I try not to let it stop me.
There are so many things I’ve found in my research that suggest MS is most common in people (particularly women) who have historically poor eating habits and difficulty managing stress. There’s also a hormonal component, which seems to be linked to why women are more likely than men to have the disease. I think of this as a puzzle to be solved, a mystery to be unlocked.
I’m determined to find a way to manage this because I am not a quitter. I am making incremental improvements in both diet and exercise. (I actually tripled my daily step count when I went to work in an office, which is supposed to be so sedentary–it just shows how much more sedentary I was at home and how much better I am doing to be working outside the home!)
I believe I can stay well, even if it’s more challenging. I kind of think I’m like the canary in the coal mine, warning everybody about what can happen if you live a typical high-stress lifestyle with a poor American diet.
I’m determined to beat this on sheer stubbornness alone (plus a hefty dose of help from my geeky research skills.)
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