Treating Myself (Myasthenia Gravis Update)

It has been a very long time since I updated you on my health. Though I talk about food here a lot, this is not about individual meals or meal ideas; it's about how I took charge of my own care and things got better--drastically so. But so you have something colorful to look at, here's an abandoned Lego man I found abandoned on a bridge after the Big Flood took my car away.

Poor abandoned Lego man! I sympathize; this is how I feel a lot of the time! I may be lying abandoned on a bridge but darn it I've got a tool in my hand and I'm gonna use it. 

I was not doing well for a really long while. You know about this if you've been reading for a while. If you haven't been reading along, note this is tagged "myasthenia gravis." You can click that link to learn much more about my autoimmune journey if you want. In short: I was diagnosed with a rare illness years ago that causes intermittent partial paralysis of voluntary muscle groups. This meant I had to walk with a cane for a long time and that I got a handicapped placard for my car, and also that I spent a lot of time in bed while my apartment seemed to descend into a most disturbing entropy I was virtually powerless to do anything about. And also I was often feeling pretty bad about it emotionally. 

On top of myasthenia gravis, I also have geographic tongue, another rare inflammatory disease that nobody very much understands and which every so often makes my tongue get very inflamed and the papillae go away. At such times I can pretty much only subsist on smoothie bowls, because I can only handle very cold, sweet food. (Anything hot, spicy, acidic, or salty is too painful at such times. Fortunately cold things are a good match for myasthenia gravis, too, because cold helps with muscle strength. Go figure.)

And on top of all that, I had several indicators that I was developing another autoimmune disorder; if I do get a formal diagnosis for that I may say something more about it at a future time. Suffice it to say: It was bad, and seemed to be getting worse. I was weak, and in pain, and life just wasn't what it was supposed to be in my early-into-mid adulthood.

This post should come with the typical disclaimer, but I'm going to be emphatic here: This is about me. I am not a medical doctor. I am an individual person navigating my own individual challenges. I can't tell you what to do about your own health. I can only tell you what I did about mine.

In the depths of my pandemic-related isolation, having no physical access to doctors and deciding they hadn't helped much anyway other than to give me blood tests and look concerned periodically, I started doing all the research I could. I don't really believe in Dr. Google, so I didn't just look at websites; I read scientific articles in medical journals. I studied. I brainstormed. And I came up with some experiments to run.

The first thing I did was to start drinking raspberry leaf tea on a daily basis, and occasionally supplement with additional raspberry leaf tablets. I did this because there was a lot of data to show that myasthenia gravis worsens with the typical hormonal fluctuations menstruating people have, and raspberry leaf was a recognized stabilizer that has been used in North America for centuries, but it doesn't come with any major risks that anyone knows about for someone like me. It is not something that you will typically get from American doctors, and I had to figure it out on my own, but egads, did it change my life. It had an immediate, dramatic effect. It had the unexpected secondary effect of virtually eliminating all the pain I had associated with my cycles--no cramps, no headaches. I stopped having to take any painkillers of any kind altogether. I was shocked. I checked the effect to be sure it was real by skipping the tea on occasion; this always resulted in misery. So. Raspberry leaf it was. I told people about this, and now my sister buys raspberry leaf tea by the case, too, because it gets rid of her own pain. It's so miraculous, and so neglected. Why nobody told us about this when we were teenagers writhing through cramps I do not know. I had decades of pain I didn't need to have. Sigh.

I then started tracking my diet in Cronometer. I told Cronometer every single thing I ate, and studied the nutritional trends that resulted. I concluded that I needed more protein at breakfast and that, in general, I needed to up my potassium intake, but my diet was generally pretty good. (I was also taking a daily multivitamin and an algae-based DHA supplement, so I'd covered most bases even if it hadn't been.) Here I want to acknowledge that plenty of vegans do just fine without deliberately chasing protein down, but most vegans don't have an autoimmune disorder attacking the proteins in their muscles (which is what myasthenia gravis does--technically, it attacks the proteins that carry messages from the nerves to the muscles, but in any case: it's a protein thing). Potassium also correlates to muscle strength, so it's not surprising that boosting it had a positive effect, as a few doctors have told me later, though none of them had initiated conversations about diet. When I'd asked them about it, they'd always brushed it off, saying diet wouldn't make much difference anyway.

My dietary experiments didn't mean making drastic changes, just gentle swaps. I traded white bread for multigrain bread with seeds, because that gave me a few extra grams. I started using soy milk more and almond milk less (more grams). If breakfast didn't have enough protein, I made a grain coffee-based soy latte or had a frozen veggie sausage. If dinner seemed low on protein, I might have peas (a high protein veggie) with it, or I'd have fruit with peanut butter as dessert. I found pasta sauces with hidden pea protein and pasta that, although not gluten free, incorporated lentils and tasted just the same but had a few more grams of protein. I sprinkled seeds on a lot of different things--salad, smoothie bowls, toast. I hunted down recipes that had nuts, as you'll have seen me sprinkling pecans on my mashed sweet potatoes or making more cashew-based cream sauces. I spooned almond butter in my oatmeal. I tried protein powder, but hated it; fortunately I didn't really need to add it because by now it's second nature to layer in protein everywhere. I remain on a continual quest to uncover new ways to sneak protein in. (If you have read here for a while, you also know that I am occasionally quite major-protein-source-averse, but I know how to sneak the protein in--it's a bit like the "hidden veggies" fad of a decade or so ago, but with protein.) Let me know if you have other ideas on that--I'm always trying new things!

I can't supplement for potassium--it's dangerous, and my doctors also advised against me trying it--so I took a multi-pronged approach. I started drinking coconut water at night if I hadn't hit my targets, which was significant at first, until I learned, thanks to Cronometer, what foods tend to be high in potassium and which ones don't. I knew bananas, avocadoes, and potatoes were good, and I make a point of trying to keep some of each on hand now. But I also learned that citrus fruits are good sources of potassium, and there was a respectable amount in my soy milk and peanut butter. I throw lime and lemon wedges into my water, eat way more bananas than I used to, drink a glass of orange juice for a snack now and then, and still have the coconut water when I have an off day. I am continuously startled by the stealth potassium boosters like tomato-based pasta sauce. Surprisingly, my protein quests also led me to more potassium. There was a bit in my herbal tea, too. Teeccino proved to contribute to my total. I embraced all the possibilities. Gradually, my meals had shifted enough that I no longer needed coconut water to hit my targets. I can't even tell you exactly how this happened, just that it seemed to naturally occur.

Along the way, I learned in my research that your body will leach potassium if you have too much sodium, so I began reducing my sodium a bit, too. I switched to low sodium soy sauce and unsalted peanut butter. I also had naturally seemed to rely less and less on frozen meals (because I felt well enough to cook), and I stopped eating out altogether because of the pandemic, so that also reduced my sodium intake, among other things. I've also noticed that I seem to have crowded out a lot of the sweet things I used to eat--especially copious amounts of chocolate--with things like fresh fruit or soy milk grain lattes, which seems to have both reduced my intake of sugar drastically and also reduced my interest in really sweet things. Everything I did, every little tweak, seemed to bring me a little bit more out of the depths of my illnesses. And if I have an off day or two it's not a problem, but I definitely notice if I don't eat properly (or what is now "properly" for me) for more than that amount of time.

As I started doing better, I began deliberately trying to rebuild my muscle strength. I started going on very short walks, then longer ones; I got to the point where I could easily walk for an hour, but when I started, a slow walk around the block was a major strain--heck, even going up and down the stairs of my apartment once or twice was a struggle. It was pretty easy to see the progress there. I began to find nature trails to explore near my home. I made a point of practicing yoga every day, usually in the morning, and sometimes I would do an extra yoga session at night, relying on a steadily-expanding cast of YouTube yoga instructors. I did not necessarily do heavy-duty yoga--in fact, I very rarely do anything most people would find remotely strenuous--but I definitely noticed myself getting stronger, as well as significantly more flexible. When I was especially weak, I stuck to yoga in bed routines, which didn't really have much weight bearing going on but still got me moving. I kept going. The lows still existed, but the lows weren't as low--and they don't last weeks on end anymore.

I talked with my doctors over teleconferences at first and later, after I was vaccinated, in person. Although they had never suggested any of this to me, they encouraged me to keep it up, because they were impressed with my progress. It's not all rainbows, however. I also lost a dramatic amount weight unintentionally, but that also tends to help with the autoimmune things going on, and because I didn't end up underweight--even though I found myself at the very low end of "normal"--they said it was fine. (I have had to replace nearly all of my wardrobe; I now shop for the smallest sizes I can find in women's clothing, and sometimes I venture off into the juniors section. That part has been quite weird, to be honest with you. But if it means walking on my own, I guess I will wear clothing designed for teenagers. It can be challenging to get work-appropriate clothes in a time when teenagers, apparently, are supposed to be virtually naked, however; my skirts probably push the envelope a bit these days. But I digress.) Even though they say it's fine, I have made a point of upping my calorie intake over the past several months; I do not want to become underweight. 

The weight part has been challenging, so my most recent change has been to start making energy bites on the weekends and pop them here and there throughout the week. My weight seems pretty stable now, even if it is stable at a low place, but still, it's not a good idea to be underweight, as that comes with other problems. This weight loss might also be related to the possibly-developing other autoimmune disorder, and there are blood tests that suggest that may be the case. So energy bites it is.

Meanwhile, for my tongue, I switched to an alcohol-free, menthol-free mouthwash (Tom's of Maine Whole Care Mouthwash, if anyone is looking for such a mouthwash (it's also vegan)), and if I did start to feel my tongue getting inflamed at any point I immediately iced it down. This was not a result of research, just desperate experimentation. My episodes with geographic tongue slowly went away, and now I easily go most of a year without one. I don't know whether diet contributed to that or not. Nobody really knows very much of anything about geographic tongue, just that it doesn't seem to kill anybody, so most doctors just shrug it off as irrelevant. (It has no cure or treatment anyway.) In any case, not having flares made it much easier to eat a healthy, balanced diet.

Doctors have speculated that other things may have contributed to a reduction in symptoms. I was working entirely from home for 18 months, and pretty well never left my apartment. In that time, coincidentally, the building I work in was totally renovated and got a new HVAC system, which is compliant with the new COVID-mitigation standards; it is the cleanest air on all of our campus. The air is cleaned and filtered even before my mask filters it. Furthermore, I am masked at all times and eat lunch alone in my car. So I have less exposure to things. But I'm not as confident of that, since I was doing just as badly six months into isolation, and saw the improvements when I started the experiments with supplements and diet.

Also, I switched to using Thinx almost exclusively, which has meant not being exposed to as many things, too. I still sometimes use the standard stuff out in the world, though rarely; for most cycles I am using, at most, two disposable products. I did not switch to Thinx because of anything to do with any of this, but I have to acknowledge that it is at least theoretically possible it had something to do with my improvements. I am very sensitive to a lot of things. It's possible my body just really, really hates tampons. I haven't noticed any difference if I do use something other than Thinx, though, on the occasions when I do.

I'm not at "normal," whatever that might be, but my life is so much different than it was--and so much better. I still don't have the stamina of a typical adult of my age, but I haven't needed my cane in ages. I love going for long walks and exploring nature trails. I have gradually been able to almost completely undo the entropy in my home. (I'm still fighting to get on top of a few things, but in general, things are okay!) The yoga I practice is getting more and more advanced. I am on the verge of being able to do the splits, which is a fun development. When I see my doctors in person they are impressed and confused, and I tell them I am healing myself with raspberry leaf, protein, potassium, and yoga. "It's a lot of potatoes," I told one, who shrugged and said he figured if it was working, I should go on eating potatoes. I took charge of myself, because nobody was doing anything helpful for me no matter how many doctors I saw. I do not subscribe to the notion that we should always treat ourselves without going to doctors or something. I really wish my doctors had been helpful. But I do believe it is up to us, when it has to be, and that there are things we can do to help ourselves out if we're not getting anywhere with the more typical routes to get care.

It's helping a lot, and that's really satisfying, even if it does leave me quite concerned about the state of Western medicine. Nothing I learned is out of reach of these doctors of mine, who are the best doctors I've been able to find. My rheumatologist is always winning awards. But doctors usually don't learn that much about rare diseases or nutrition, let alone combining the two to address issues, and American doctors are far too overextended to expend their energy on confusing patients anyway. Gregory House doesn't exist. Although several doctors have found me intellectually interesting, and have clearly enjoyed seeing my rare symptoms on display, they have not really done anything for me other than order a lot of tests. So I had to do all this for myself. I know there are a lot of people out there who aren't able to do that, because not everyone has access to the resources I have (because I work for a university, and can get medical journals easily) or the educational background needed to understand medical journals (which can be challenging even for me, given that I'm not a scientist, but I also have scientist friends for when I get really confused). I feel for everyone trying to navigate challenges like this, and I can't recommend any solutions, just some reassurance that you're not alone.

I usually end these kinds of update posts with a song, so here's one I think may encompass how I'm feeling these days.