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How do you diagnose myasthenia gravis?

Autoimmune Diseases | Last Active: Feb 28 7:26am | Replies (36)
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@brighterday

Thank you so much for your response, @pmci! I have been struggling with this for at least 7 years, but was only diagnosed about 3 months ago. I’m seronegative which I know contributed to the delayed diagnosis. Your advice about avoiding extremes is so helpful. I have definitely noticed an exacerbation when hot. … hot weather, overheated room, hot shower.
If you don’t mind, I have a couple questions. Have you taken medications in addition to Mestinon? Have any medications been particularly helpful? Did any have intolerable side effects? I am on Mestinon and my doctor is recommending we add Imuran. I have a lot of concerns about Imuran but don’t know if the concern is warranted?
Also, what medical specialty do you recommend as most knowledgeable in treating MG? General Neurologist?Neuromuscular specialist? Rheumatologist?
I know no one with this confusing disease and am feeling quite alone on this journey. Thank you, again, for your response!!

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Replies to "Thank you so much for your response, @pmci! I have been struggling with this for at..."
Becky, Volunteer Mentor | @becsbuddy | Nov 20, 2023

@brighterday It all seems so difficult, doesn’t it? Finding the right doctor and right medicine. I found this site for you. It may have many of the facts that you are looking for.
https://www.mg-united.com/quizzes/what-to-look-for-in-a-doctor-quiz?mid=gawcamid=14402020317_gawadgrid=127713333538_gawadid=610728184936&gclid=Cj0KCQiApOyqBhDlARIsAGfnyMr9UhK0BevavoaRlXi9lgGIxQctFqjwDk_aE4Gyd3KXPe3b3ib6q20aAp2LEALw_wcB
What is your main concern about Imuran?

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Pippa | @pmci | Nov 21, 2023

I wish I could give you more useful advice but I’m unfamiliar with Imuran, so can shed no light on its efficacy. As to the best specialist, I guess a neuromuscular specialist would be the best, but your doctor should be able to tell you this. As I’ve said, but want to emphasise, have a Thymectomy. When I was a young woman I was extremely weak, but over the years my symptoms subsided and then disappeared, and I can only assume the removal of my thymus gland made that possible. MG is different for each person who has it, so how you deal with it will depend on your particular symptoms. Do you mind me asking what they are? If we have an overlap I might be able to give you more specific advice.

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