Getting Diagnosed with MG

My autoimmune journey started during the summer of 2015, when I was diagnosed with myasthenia gravis (MG). I’d been having symptoms for over two years but nobody suspected MG. I went to three different neurologists, one optometrist, one ophthalmologist, one psychologist and one psychiatrist; everyone thought it was psychosomatic. By the time I was diagnosed, I was in really bad shape; I was experiencing regular falls, persistent double vision and extreme fatigue. I had trouble dressing myself, preparing my own food and walking for longer than a minute or two. I had no idea what was happening to me and it was, simply put, terrifying.

The symptoms were at their worst when I was extremely stressed or under severe emotional distress. If I accidentally encountered someone I didn’t want to see, like an ex lover I still had feelings for, I would get – temporarily – paralyzed. If I was at the airport and had to run to a far away gate to catch a connecting flight, I would get paralyzed. If I was having a fight with someone who knew how to push my buttons, I would get paralyzed. That got me thinking that maybe it was all in my head; maybe I was crazy after all. Today I simply know that stress and emotional pain are, along with sleep deprivation, my biggest MG triggers.

Despite the severity of my symptoms, I managed to hide them from my friends and colleagues – at least most of the time. When I was forced into a situation were I had to say something – for example, if I was walking with someone and my legs got too weak to carry on – I would usually say that “there’s something wrong with my legs but the doctors can’t figure out what it is”, and smile. The other person would then ask something like “is it painful”, to which I would respond “no, it’s more of a numbness”. That usually ended the conversation. Occasionally, I would get some judgement, for example when I would call an Uber for a distance that could easily be covered in 5 minutes by foot; I could tell that people thought I was overreacting (since it wasn’t painful, right?) or simply lazy.

When I was diagnosed, my first reaction was a sense of relief and vindication; I wasn’t crazy after all and I sure as hell wasn’t lazy! But after that initial weight dropped of my shoulders, all I could feel was anger. Anger not about the MG itself, but about the fact that so many “experts” had failed to identify it. Not just that, but they’d ignored my calls for help and, as a result, the MG had progressed from my eyes, to my legs and feet, to my hands, to my lungs.

When I told my primary care physician about the diagnosis, she responded that “it’s no big deal”, that they’d put me on Mestinon (or Pyridostigmine) and that it’d get my symptoms under control in no time. My neurologist was also very optimistic, reassuring me that he’d get me to “feel better” very soon, and he indeed prescribed Mestinon. But it didn’t work for me. Although he got me started at the minimum dosage, I had severe trouble breathing (I almost had a panic attack) and my double vision got worse to the point that I couldn’t drive, read or do my work. After the Mestinon fail, he suggested steroids (Prednisone), but I refused, having read about the dreadful side effects and having met a number of MG patients who warned me to stay away from them. He then mention IVIG therapy but said that he needed to do more research to make sure it was safe for me. It took over a month and multiple tests for him to OK the IVIG (more on this soon). Meanwhile, I kept getting worse and reached a point were I was certain I’d end up in a wheelchair.

I was losing hope in traditional medicine, so I started my own research looking at alternative treatments, including acupuncture, homeopathy, medical marijuana and diet changes. And so I discovered the Autoimmune Protocol (AIP) diet, a strict diet plan that removes foods that are considered gut irritants, including all grains, dairy and nightshades. The science behind AIP is based on the gut-brain axis and is discussed extensively in Dr. Sarah Balantyne’s The Paleo Approach. While I didn’t find any evidence specific to MG (it is a rare disease after all), I did find thousands of people using the protocol to heal from other autoimmune disorders, including neurological conditions such as multiple sclerosis and Guillain–Barre syndrome. It decided that it was worth at least a try.

(to be continued)

[Photo by Flickr user Daniel Friedman and used under a Creative Commons License]

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