Samara
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I was diagnosed in a rather old-fashioned way. After a few terrifying months, my PCP referred me to a neurologist who referred me to another neurologist that specializes in muscular disorders. The Neuro did a quick exam, listened to my description of my symptoms, and said “I think I know what you have. Try mestinon and if it has any effect on your symptoms, you have MG. It doesn’t work on anything else”. The mestinon did help (for a few hours, and, of course, it stopped being enough as my symptoms got worse) and thus I was diagnosed and treated.
Several years later, I got a new Neuro who had me tested for the acetylcholine receptor antibodies. That test confirmed the diagnosis, but really, the “mestinon test” did the trick.
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I got the Moderna vaccine. The 1st shot just made me tired for a day. After the 2nd shot, it felt like I had the flu for a day, and then the symptoms suddenly stopped about 24 hours after the shot. It did not exacerbate my MG.
I was pretty confused by the new guidance on 3rd shots. After talking to my doctor, I plan to get a 3rd shot later this week. My doctor said that the evidence shows that people taking immunosuppressants might not develop enough antibodies after only 2 shots and that this accounts for a lot of the “breakthrough” infections in vaccinated people. The CDC website has really good info on this for anyone who wants to read the new guidance.
I’m really hoping the side effects from the 3rd shot aren’t as bad as from the 2nd! That was not fun.
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Wow! Amy, what a good reminder. I hope you’re feeling better.
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Hi Joseph. For me, it has been a gradual process. In the beginning, I had a thymectomy and took high dose Prednisone. That stabilized me but was not a long term solution because of the side effects. Then, for a number of years, I was on both IVIG and azathioprine. Eventually, I upped the dose of azathioprine and was able to stop the IVIG. Now, I’m back down to a lower dose of azathioprine + mestinon as needed. It’s working for now.
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Hi Pamela. What your Dr told you was consistent with the earlier CDC guidance. The new guidance suggesting that immunocompromised people need a 3rd shot is based on new research. Its unclear from your post how soon you started taking prednisone after getting that vaccine, but I suggest you ask your Dr whether you are supposed to get a third shot.
Update on my 3rd shot: I got it yesterday. Still had flu-like symptoms, but not as bad as with the 2nd shot. I’m tired today, but no obvious exacerbation of my MG symptoms.
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Hi Deborah. It sounds like you and your husband are going through a really rough time, and the pandemic is making it even more confusing and scary. Your husband’s symptoms sound a lot like what mine were like in the beginning. Just know that it gets much better once you know what’s causing it. I was diagnosed in 2007. The first 6 months were the hardest, and then the treatments started to work and I gradually got back to living my life. It hasn’t been perfect, but the treatments have been good enough to keep MG symptoms to a minimum.
I’ve never heard of a vaccine causing MG. I don’t think anyone knows what causes it. But I can see how the timing of your husband’s symptoms would make you suspicious. I’ve long believed that extreme stress that I was going through in 2007 was the trigger that made my body go haywire. But autoimmune conditions run in my family, so my guess is that it was just a matter of time until I got MG anyway.
I hope your husband starts to feel better soon.