Adventures in a Brave New World: Myasthenia Gravis Update

This is one of my rare no-food posts (although I do write here about eating). But here's something pretty to look at (although winter sometimes makes that a bit scarce):

I just have some things to say about myasthenia gravis. (If you haven't seen it, you may want to check out the post I wrote when I got my diagnosis, which also explains what this rare disease is.)

I'm between neurologists right now, because neurologist #1 had a terrible bedside manner, his office staff wouldn't answer the phones or return calls, the answering service didn't give messages to the doctor, and the doctor argued with me about everything, even whether, as I said, taking a certain medication for two days counted as "a couple" of days. "If that's what you call 'a couple,'" he'd said sarcastically. (Doesn't everybody, including the dictionary, define a "couple" as "two"?) When I asked him a question about an upcoming CT, he snapped that he didn't have time to answer questions and I should figure it out on my own. There was more but that was enough. This wasn't sustainable, so I fired him. There's only so much "going along" I will do to avoid having my doctor write me off as "difficult." (Young women are more likely to get substandard medical care than other groups, studies have shown, and there is a certain amount of appeasing the doctor I have to do for the sake of survival--any woman in my boat knows what I'm talking about.)

I've made an appointment with another neurologist, but that took me a while to do. I found that most neurologists flat out don't treat myasthenia gravis, not just because it's a rare disease (although it is), but because they only treat one more common disease, like Parkinson's or epilepsy. Subspecialization seems to be the way of the neurologist. Also, there were zero female neurologists who treat it around here (I'm more comfortable with female doctors, especially after a series of experiences like the one with the neurologist I just fired with male physicians). I'm keeping my fingers crossed that this new doctor will be a better fit and trying to figure out how far I am willing to drive to see someone competent if he's not a good fit.

Meanwhile, there has been some spreading of the illness. It took me a while to realize that was what it probably was. After lambasting myself several times for eating too fast (although I wasn't eating fast) when I was choking on my dinner every day and wondering why it was feeling like my food kept hanging out in my esophagus instead of going down all the way, it occurred to me that this was probably what they meant when they said people with myasthenia gravis have "trouble swallowing." It's also started to manifest as incomplete swallowing--that is to say, when I swallow, some stuff gets left behind and I have to swallow again to get everything out of my mouth. This can be helped somewhat by drinking ice cold things to help it along (cold stops my immune system from blocking the protein that makes my muscles do their thing), though that's not fun in the winter.

An online support group I've joined sometimes terrifies me with their stories, but it also helps me to see that in spite of how weird and unpleasant this is, it is still a relatively mild manifestation of the illness. I can swallow most of the time and therefore I am not slowly starving. And I'm breathing without having to concentrate, and I don't think it has yet spread to my voice, either. I can still talk.

My vision continues to be an issue, and yet I can't bring myself, at this juncture, to wear an eye patch. On Saturday morning I got up late, looked at myself in the mirror, and I was shocked. I could see. You don't know how badly you're seeing things until you see them better, I guess. And also my droopy eye, although still droopy, was much more open. I looked almost conventionally attractive with two eyes of about the same apparent size. I made a mental note to try harder to prioritize sleep. But my vision went wonky again within hours.

While all that was happening, an email went out at work a few weeks ago asking people to join a choir to perform at our holiday party. I joined for two reasons: One, because I do enjoy singing and don't have much outlet to do so anymore, so getting to do it during working hours is really pretty cool. But two, it would help me determine whether I'm losing the ability to sing (trouble singing is an early sign that the myasthenia gravis is headed for your voice and/or diaphragm, and with that, the ability to talk and/or breathe unaided).

Singing feels poignant to me now, as I realized, doing it, that yes, I am losing some strength in my diaphragm, and this will probably not be a thing I will always be able to do. And the swallowing thing shows up in singing, too, as it seems I can't swallow at all when I'm having to sing and breathe and whatnot, so my mouth gradually fills with saliva during each song. I never realized that swallowing was so important to singing, but it is.

My colleagues, unaware of the internal drama playing out as I am concentrating on singing "Carol of the Bells" without drooling, say that surely I must have been in a choir before (yes) and wouldn't I like to be in one now (mysterious smile). Our volunteer director would like me to be in her non-work choir, but I can't manage (due to the the fatigue) a regular commitment like that, I think, and beyond that, I wonder what it might be like to gradually experience that kind of loss of function. Would I want to know it was happening, or just discover, one day, that it had?

But for now I sing, and I try to cherish it while it lasts. And maybe I can count that as bravery.


  1. Managing chronic illness is courageous in and of itself. It took me a long time to give myself that. You are doing a great job, especially this soon post-diagnosis. Do any of your friends know? I would recommend at least telling a few, because having people to share the grief with declines or the joy of improvements does so, so much.

    1. Yes, my friends know, and so do the co-workers with whom I work more closely. It's hard for even them to really see or understand, though, because most of what I experience is invisible. Someone I see regularly apologized to me last week for not taking my illness seriously because he couldn't see any evidence of it doing anything. Thanks for your support.

  2. I am sorry that your first doctor was such a bastard, he sounds horrible. I am quite shocked at some of those things he said. Taking control and looking for a new doctor is really great, and I hope the new one is good. It is a shame that, as women, we often have to advocate for our health much more than men. <3

    1. He was pretty bad. I liked some things about him in the first visit, but afterward things went downhill fast.

  3. Thank you for sharing your update. I'm so sorry you've been dealing with such an asshole for a doctor. It can be so hard to find someone that you trust and click with and I'm sorry this experience has been so difficult for you. The stress of having a chronic illness is bad enough but to have stress about seeing the person who is supposed to be helping you is just next level awful.

    I agree with the above poster that you are incredibly courageous and strong. You deal with your illness with such grace and it's amazing to see. What you go through sounds so scary and to feel like people don't believe you or are not more supportive because they do not physically see symptoms is incredibly frustrating

    Thanks again for keeping us updated and educating us on your illness. If you ever need someone to talk to please don't hesitate to reach out to me! <3

  4. Wow, your first neurologist was a real jerk; good for you for firing him and moving on to a new doctor. The online support group sounds like a helpful resource, and that's great that you sang in the choir! <3


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