Hi, Dan. I hope this info about my path gives you some additional paths to explore, in addition to the surgical options. As well, if your dad chooses surgery, this might be helpful in conjunction:
Although my symptoms were not as severe, I had eyelid drooping bad enough to impair vision, then vision blurring, double vision, and eyes began to be misaligned (picture Marty Feldman) and utter, debilitating exhaustion by 3 or 4 pm most days, and hand and arm tremors and weakness, particularly on the side the eye was drooping, all within 6 weeks, starting in September 2016. The MG likely began subtly in February 2016, along with two other autoimmune disease and conditions simultaneously. Although it’s a “snowflake” disease–everyone will have an individual experience, I do believe the key is to drastically reduce anything that can trigger inflammation for your Dad. In my case, it meant a full dosage of mestinon (120 mg 4x per day, carefully taken with meals to avoid intestinal inflammation/diarrhea) to allevuate the symptoms, and a severely restricted diet to address the source of inflammation. I’ll use acronyms here, but all are easily searched on Google: first, the diets that gastroenterologists recommend to completely calm down the digestive system (it also removes almost every type of inflammatory causing get food from a diet): AIP (and strictly gluten free) and low FODMAP. Second, although it costs money to have it done, the food sensitivity test (www.nowleap.com) followed by Nutritionist guided LEAP program of food eliminarion/reintroduction, and careful food and symptom logging. Below is what I’m eating this week. Here’s the difference that removing inflammatory triggers from my diet has made: My energy is back 95%-I can have a normal life!!–my eyelid is 80-90% above my pupil 6 days a week except an hour or 2 a day. My hand and arm tremors are 100% gone. When I stopped mesrinon for 5 days (to be “clean” for a single fiver emg test), all symptoms remained gone. And I’ve gone from diarrhea 4x a week to 1 (I acquired IBS along with the MG.) I am optimistic that once my “inflammation storm” is over, I can slowly return to a more diverse diet…but I will remain on organic and grass fed, hormone free for life, now that I see the impact that a single bowl of processed potato chips can have–triggering a relapse of MG symptoms all over again for 10 days.!!
Presently, I eat very little other than chicken, white fish, bananas, blueberries, greens, squash, some fresh herbs, carrots, hazelnut milk. Organic cocoa powder and a smidge of maple syrup if I must. No grains. A little dairy and beef, zero eggs, no pork, no soy, no gluten, zero nightshade (tomato, potato, peppers) nor onion, garlic, Apple, pear, nor prepared foods. I eat homemade chicken bone broth every day, with high collagen content to heal the gut, lots of mineral content (organic free range only). Lots of ginger. Lots of Essential Fatty Acids–Omega3, Borage, Flaxseed.
Hope this gives you something to think about. It probably seems all overwhelming. It has felt that way to me. It is wonderful to hear that you are searching for answers for your dad…As someone with MG, just having the support of a family loved one is the most important part of this experience, for me. It is worth more than any prescription….stick with it, Dan. You and your family will find the right choices for yourselves…..