[Kent]

I did …. emphasis on past tense. I’m replying to this to encourage people to advocate for themselves. Trust your instincts. Examples … my leg weakness was due to being dehydrated; my jaw muscles soreness was face swelling due to prednisone. And this was coming from a neurologist! I’m not an MD so maybe these were contributing factors but not the root cause I changed neurologists. I found one who listens and respects my concerns. You know your body better than anyone else. I wish everyone the best Find a neurologist that works with you.

[Junker]

I have been told that muscle pain and cramps (especially at night) would not be related to MG although I had the strong feeling that it would occur subsequent to physical work aund exercise. Gaining lots of weight in the course of my first MG year, a lot of symptoms and probelmes were simply associated with being too fat. Meanwhile I I have learned to provide sophisticated and well-founded responses to such superficial presumptions.

[Barry]

I had a Doctor take offense when I asked if they could please check to see if a possible new medication he wanted me to take was OK with Myasthenia Gravis. He was quite upset that it was not “allowed”. I guess he couldn’t get a kickback for prescribing it to me. I have dumped him and have a great doctor now. There needs to be a greater awareness among medical professionals that checking with Pharmacists and Neurologist specialists is good patient care.

[Charles Karcher]

My diplopia is positional in nature. My neurologist no longer believes it is Mg related. My ophthalmologist did a series of tests designed to pinpoint a nerve(1234) that could be causing the symptom and the test was inconclusive. If I want to find out more I would have to consult an neuropthamologist which for me would be a 400 mile round trip. Until it begins to impact my daily life in a real negative manner I will live with it.