Profile

English male, 77 years old, fit, and with no physical illness whatsoever until September 2023 when my wife noticed a drooping left eye. Prior to this, for the previous 18 months I had noticed balance and depth perception problems (had to ‘feel’ my way from (example) the kerb to the roadway. Tested for stroke -negative.
Ptosis became worse in Feb 2024 and my optician referred me to my GP. Diagnosed MG in May 24 after blood work showed AHCR antibodies but MUSK showing as 0.
Balance issues quickly began to exacerbate leading me to stagger from place to place rather than walk using walking poles for steadiness but this can vary from day to day, sometimes I wake and can walk 80% normally without any aid.
Ptosis has now spread into my right eye but seems to be kept in check by my medication consisting of 60mg of Mestinon 4 times daily backed with 2x 15mg Pro Banthine to counteract the massive stomach cramps that came with Mestinon (working perfectly – no cramps whatever now). Mestinon lifts my left eye from 4/5ths closed to just above half whilst opening my right eye completely.
That said, MG being the weird beast that it is, I can wake up with both eyes wide open for an hour or so until symptoms return. I find it takes at least 1.5 hours for the first Mestinon tablet to kick in, once in train symptoms remain stable throughout the day.
I have no exacerbated fatigue issues, but have always been a light sleeper.
Hopes of being one of the 20% who finds stasis in Ocular MG only, were dashed last week when I had my first chewing issue, albeit only twice, where my jaws seemed to run out of power whilst eating something that needed heavy chewing.
Having read so much about MG in the past month or two I have moved from a high carnivore, high processed diet to a Pescatarian/plant based diet supplemented by a probiotic yoghurt a day for gut health. I have also reduced my alcohol intake drastically. Result? 18 pounds weight loss and much more mental alertness and acuity.
Supplements?
D3/K2 (currently upped to 4000iu per day), Astragalus tincture, Huperazine A, Choline/Inisitol capsule, fish oil and Pre+Probiotic capsules for gut health.