Jade Muttamara
Nov 5 · 5 min read

Evolving with Myasthenia Gravis

Note: I wrote this 9/21/19 but finally had the nerve to publish this today.

I’ve had Myasthenia Gravis, a rare chronic neuromuscular autoimmune disease, since I was 13. I feel intense muscle weakness mainly in my eye muscles, and also the muscles all throughout my body. I sometimes get intense double vision and feel my eyelids start to droop. The only form of exercise I can tolerate is walking or private Pilates (due to the ease and support of those machines).

I adapted well to having Myasthenia Gravis most of my life. It never got to a point where I needed a breathing ventilator, like some MG cases. I think because I was diagnosed so young, I learned to adapt and blend in. I downplayed my symptoms; people assumed I was more introverted than average. I let people think this because it alleviated some of the energy that goes into socializing.

I think because I’m physically weaker than average and naturally introverted, I always preferred to sit with information and study it. Reading and writing are my preferences instead of verbal communication, although I’m really good at verbal communication when I really put in the effort.

Since late 2018, my physical health took a deeper nose dive than usual. My eye muscles were weak all day long no matter what, as opposed to only during visual concentration. When the unusual eye weakness and double vision lasted longer than a few weeks, I thought it would go away in time. I sometimes get bouts of non-stop double vision that last up to a month (once every 2 years), so I thought I could ride this out. But it never went away. The double vision went on and on and on. There was never any relief.

In early 2019, I finally freaked out to my neurologist, and he recommended I get back onto Immunoglobulin therapy (IVIG). I’ve tried IVIG twice in my life for a few months recently. In my mind, the negative aspects of the treatment outweighed any benefit as even with insurance, the initial loading dose isn’t cheap. A nurse has to administer the intravenous infusion every 2–3 weeks for up to 8 hours at a time.

I was going through a lot emotionally, which affected me physically, so I thought I could “ride out” this unusual bout of constant double vision. But it was looming on 10 months of constant double vision and drooping eyelids that wouldn’t let up—and if it was even possible, my double vision was getting worse over time, causing the emotional stress to get worse. It was this horrible negative feedback loop.

It hit me: something had to change.

Last week I went to a neuro-ophthalmologist for a consultation into prism glasses.

There was something else I thought I could also try… over the last year in Myasthenia Gravis communities, I heard a few people mention how changing their diet to something called the autoimmune protocol (AIP) helped their symptoms. I was initially skeptical since all my doctors never mentioned diet in all the 25 years I’ve had this disease, and I saw some of the top docs in the field. But then I noticed enough mentions that it piqued my curiosity.

The autoimmune protocol diet is similar to the Paleo diet (super meat-heavy), except AIP is even more extreme with the food restrictions. I was pescatarian/flexitarian most of my adult life, so this was RADICAL for me to even think about. Luckily, I can still eat almost all veggies while doing AIP.

I experimented with a vegan version of AIP back in February for 2 days, but it caused horrible gallstone within 48 hours. I re-introduced dairy and gluten into my diet immediately, and for whatever reason, my gallstones stopped acting up. But I noticed that my double vision and brain fog disappeared for those 48 hours. This was tremendous. The horrible gallstone pain wasn’t worth it at the time; AIP was also too difficult since I eat out or do takeout 90% of the time and have an aversion to cooking.

Due to a ton of stress unrelated to my disease (or it probably is holistically related), I had to table AIP and focus on taking care of other personal responsibilities.

Well, three days ago, starting 9/18, I made a real effort to try AIP again. I really made an effort to eliminate all the foods from the “no” list:

  • trans fats
  • chemical additives
  • artificial colorings and flavorings
  • high-fructose corn syrup
  • grains (especially wheat, barley, and rye)
  • legumes (especially soy, peanuts, and kidney beans)
  • dairy
  • processed and refined foods
  • sugar substitutes (including stevia)
  • refined vegetable oils
  • nightshades (tomato, eggplant, potato, pepper)
  • Alcohol
  • Coffee
  • Nuts
  • Seeds
  • a ton of spices

ALL THE FOODS THAT GAVE ME PLEASURE, ESPECIALLY AS SOMEONE USED TO EATING MOSTLY NON-MEAT

Foods on the “yes” list include a lot of meat and fish (but no to restaurant bacon and sausage), lots of vegetables, and a little fruit.

Since starting this up again on 9/18, there was a noticeable improvement in my double vision and droopy eyelids. It’s only been 3 days, but as I type this, I’m looking at these words on the monitor with a very strong gaze, my eyelids are raised without struggle, and the muscles throughout my body feel normal strength (for me).

So far, there might be something to this.

I’m not 100% AIP yet. Two nights ago, I downed 5 Trader Joe’s peanut butter cups. It’s required I eat a specific amount of calories with my bedtime medication, so last night I ate pasta with cheese because I’m still unable to figure out how to down a specific amount that’s easy & quick. I’m figuring it out though… this week I’m experimenting with Medjool dates at bedtime.

My usual diet is filled with a ton of gluten, dairy, nightshades, spices and nuts/seeds. I don’t know yet what particularly in my diet (aside from some emotional stress, but that isn’t diet) is triggering my symptoms to flare. Starting out on AIP, so far, is producing some mild physical improvement. I’m going to stick this out and keep learning along the way.

Myasthenia Gravis, AIP, Paleo

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