Pamela
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I’m really confused now re: remission. I have had gMG for 13 years but have not tested positive for it, (seronegative) yet I tested positive with EMG and fine needle test. A few months ago I stopped having my constant muscle weakness and experimented with not using Mestinon and didn’t notice a difference. I went to my neurologist and he did the EMG and nerve conduction tests and I tested negative. He said I don’t have MG. Wow, okay! Then during a stressful event my weakness returned and Mestinon again was effective and helped me through the weakness. So was the Neurologist correct or perhaps it was a remission? I was so terribly weak several times in the past 13 years that I couldn’t work, had IVIG and then felt so much better afterwards. I’m confused about this as I never considered a remission period, just felt like I might be a mental case. Reading this all about remission has my head spinning but wondering if anyone else has experienced anything similar?? Thanks, Pam.
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So is 200 MG patients really enough to determine that it does NOT worsen MG or cause exacerbations? Afraid not in my case because it began that very evening after getting the very 1st vaccine. So call me a very rare case but don’t say it doesn’t happen or that it was from “XYZ”. I was doing very well that day and for months before that, then all my muscles started burning and I got weaker and weaker that evening until I had to go in the hospital for a week and get IVIG.
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Absolutely! Both extremes make me weaker. I get easily dehydrated in the summer and my muscles cramp a lot. I have to drink electrolytes day and night.
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To Samara:
Thats interesting what your dr told you about immunosuppressants prior to getting the shots because that was my concern I brought up to my Neurologist prior to getting it. He said that it wouldn’t have the effect of impeding the efficacy of the shot. I used my better judgment and would not take Prednisone. I only took it after having muscle pain and extreme weakness after the shot. I really hope my doctors and the hospital reported the adverse reaction to the shot! Take care!
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I’ve had gMG for 11 years. I had my J&J in April. That night I had burning muscles all night. I had never experienced anything like this ever and it was painful. I began getting weaker despite my regular meds and began taking 20 mg Prednisone to try and alleviate the side effects. I kept getting weaker every day and couldn’t walk, hold my head up etc. I contacted my Neurologist and went to ER. I was in the hospital for 1 week on O2 and IVIG. I was much better after this but have been more sickly since (ie, had 2 colds) will NOT be getting a booster shot!