I have Bowie’s “Suffragette City” stuck in my head, which is about the only fun part of realizing I’m in relapse city.
Even worse than that, it’s actually dawned on me that working full-time earlier this summer triggered a relapse…one I never recovered from. It’s the first relapse I never treated and just expected to go away on its own, which it didn’t.
It’s tough to know how to handle relapses. On the one hand, I had a relapse in August 2015 and spent like $500 a day on high-dose IV steroid treatments that didn’t help. I don’t actually remember the exact dollar amount that was my cost after insurance, but I know it was a lot, in the multiple hundreds. It was enough that it was a big sacrifice and therefore it was very frustrating that it didn’t work to relieve my symptoms.
But I’m also wondering if I was wrong in believing that there was no point to the high-dose IV steroids. On the one hand, I know (as the people in my natural-medicine MS groups point out) that steroids have risks and they aren’t technically necessary. Supposedly, if you don’t get the high-dose steroids, your relapse is supposed to end on its own eventually.
Now I’m wondering if that was good advice, though. I didn’t get steroids when I left my job in July, thinking the symptoms would resolve themselves with time and avoiding being out in the heat. But they didn’t.
Maybe I should have tried to see a neurologist when I quit my job and was doing so badly health-wise and gotten the high-dose steroids then. Because here I am, five months later, realizing I never recovered from that relapse. If I haven’t recovered on my own without steroids by now, I probably won’t.
I don’t know if that means my MS just progressed on its own and the steroids would have had nothing to do with it. In truth, I am almost totally back to where I was when I left the hospital last year, before I got physical and occupational therapy. My face isn’t drooping anymore, but I still have trouble with balance.
I still have trouble with handwriting, to the point that when I have to fill out forms at the doctor’s office, for example, I have to ask for help because it would take me far too long. Four pages of handwriting takes me at least a half-hour and causes me a lot of pain, and it used to be a painless 5-10 minutes max.
Maybe my natural approach isn’t working. I mean, I know I’m not a great candidate for any of the typical disease-modifying drugs (DMDs) for MS. My records from my neurologist even say so. None of the neurologists I’ve ever seen has had much faith that the DMDs would help me. But at the same time, I went without steroids when I was sick earlier this year largely because 1) I believed the natural medicine camp who said it would go away on its own, 2) the steroids I had in 2015 and 2016 seemed less effective than they used to and 3) I just plain couldn’t afford them.
Maybe opting out of steroid treatments, even if they’re of limited effectiveness and a high cost to us, was not a smart idea. Especially because I now believe the natural medicine camp is wrong about relapses going away on their own.
Given the unpredictable nature of MS and the way it progresses, it’s very possible that I still could have gotten worse even with the steroids. But I can never know for sure.
In truth, I also should have gotten physical and occupational therapy again when I was so sick after I quit my job this summer. If I had seen a neurologist, they surely would have recognized that and made the referral.
Or then again, maybe not; my neurologist was not the greatest. When I saw him in October and told him I’d been sick since the summer and that steroids weren’t as effective for me anymore, he referred me for IVIg treatment instead. I did believe the IVIg would have worked, but it was far beyond what I could afford.
After I found out that the expense was far beyond what I could cover, I told his staff that I couldn’t afford the IVIg treatment and that was the end of that. They said maybe I could come back after the first of the year, assuming I’d have enough money in an FSA after the new year to cover it. (Not even close. Most people don’t have an FSA equal to nearly 40 percent of their annual gross income. And I’m actually going into the new year without any insurance at all.)
But they also didn’t say anything like “hey, do you want to try steroids anyway?” Or “we should at least get you some PT and OT.” Nope: I was left dangling over the proverbial cliff, presumably until I get good enough insurance that it covers those kinds of treatments, when and if that ever happens.
If I can’t afford IVIg, will I ever get better? I don’t actually know. Realizing that I’m still as sick as I was when I left my job and that I never recovered from that was a rather sudden realization.
I recovered a little bit after my horrific relapse and hospitalization last year. After having a couple months of PT and OT, I was back to about 80 percent of my pre-hospitalization baseline. But then I lost nearly all of that progress when I had my full-time job.
I may not ever get better from where I am now. No one can really say if I would have avoided getting this bad if I had seen my neuro and gotten treatment when I left the job. MS is progressive and it’s not uncommon for people to have relapses that just permanently leave them more worse off than before. That’s why so many people with the normal relapsing kind of MS take meds to try to prevent relapses, because you never know if the next relapse will have permanent effects. You know, like what happened to me.
Say, hypothetically, that my husband gets a job with good insurance next year and I can get the IVIg treatment then. I don’t actually know if that will work, either. It’s not a guarantee and the treatment is still considered experimental.
Maybe this is as good as I can ever hope to be again. That’s a really terrifying thought because I’m so much worse than I was even two years ago. I’m immeasurably worse than I was when I moved down here nearly five years ago.
And it’s still so hard for me not to blame myself, like I didn’t try hard enough to prevent it from getting this bad. The neurologist I saw last year in the hospital thought I should at least try Ocrevus, but I was really scared of it. Still am. But at that point, my case was considered pretty advanced and even he was skeptical about whether it would help.
It’s not like I was a more textbook case of someone diagnosed with relapsing MS when they had just a couple lesions, when maybe getting on Rebif or Gilenya could’ve worked. My whole approach to the MS meds likely would have been quite different if I’d been diagnosed more than a decade earlier when I first had symptoms. I was already at the “big guns” last-resort stage of available treatments when I was diagnosed.
I don’t honestly think that if I had started Ocrevus last year that it would have stopped me from getting bad. Or that it would have enabled me to work full-time. But there’s still the littlest doubt in the back of my mind, asking what if? I still wouldn’t have been able to afford all the MRIs and still wouldn’t have insurance going into the new year, so even if I had tried it, I’d have to stop now either way.
But what if Ocrevus could’ve kept me from getting worse? What if being super super strict with my diet could’ve kept me from getting worse?
The bigger question I can’t answer is this: if those things could have kept me from getting worse, is the fact that I got worse my own fault then?
In the meantime, since I don’t really have access to treatment or insurance, I’ll have to approach this as a DIY project. Try to do my PT and OT exercises from before and see if they help. Get much stricter about my diet. Maybe completely cut out sugar and dairy, even though I don’t have much. Force myself to get much more exercise than I currently am.
I have to hold on to hope that I can feel good again. That I can feel even as well as I did before I had my full-time job. If MS is unpredictable, it can possibly become more manageable. I can’t ever make it go away entirely, but I still have hope that I can do better.