Here is my story with gMG in hopes that some readers might find it helpful. I am an 83 year old male. Six years ago during a routine eye exam in Arizona, the optometrist noticed that I had a slightly droopy left eyelid. He immediately sent me to their company's in house neuro-ophthalmologist, who (after a blood test) diagnosed my situation as Ocular MG. I was, of course, very fortunate that the company had both medical professionals on their staff, resulting in a very early, correct, diagnosis. I was immediately prescribed a daily dose of 60 mg of Pyridostigmine (Mestinon). But within a few weeks, I was experiencing all six typical generalized MG symptoms. Again, I was fortunate in that while all were definitely making their presence fully known, the symptoms were not debilitating in my case. The neuro-ophthalmologist then sent me to a neurologist colleague whose specialties include MG. She almost immediately prescribed 10 mg of Prednisone per day. On my own, I then started a daily regimen of very low intensity weight lifting, which I continue today and firmly believe contributed to improvements in my gMG related condition. After a few weeks I noticed marked improvement in that my gMG symptoms gradually and markedly declined in severity, but did not disappear altogether. Now, over the course of the past 5+ years, the neurologist has gradually reduced my daily intake of Prednisone down to a current 2.5 mg daily. Additionally, very recently, with the goal of eventually getting me off Predisone altogether, she started me also on 100 mg daily of the "steroid sparing" drug, Azathioprine. Both drugs have their associated risks, but in my case the combination seems to be working well. Currently I have almost lost the original six gMG symptoms, but now experience what I consider to be mild weakness of my leg muscles. I have read that long term (several years of) gMG can can move to the arms and/or legs. But, most importantly, I have returned to a fully normal life. I have no idea if the above approach might help others with gMG, but I'm thinking it doesn't hurt to tell you of my quite positive experience (at least so far !). A sincere suggestion: if your doctor approves, follow up on my program of very low intensity, daily weight lifting, including gradually using heavier weights if your body is telling you that you can do more. I believe that program has helped me a very great deal. At a minimum it gives you a new fighting mental spirit that you will not just lie down before this nasty disease. P.S. I did some reading before beginning the weight lifting. The literature on gMG does not discourage mild exercise if you find that you can handle it well.
@wpmccarty Welcome to Mayo Clinic Connect! You certainly have a positive outlook on your disease!! Though we shouldn’t refer to it as your disease since you’ve mostly gotten rid of it!
I certainly hope that you’ll stay with us—you probably have lots of good tips!!
BTW, how did you find out about MayoClinicConnect?