Myasthenia gravis - can it come back?

Posted by Pippa @pmci, Aug 22 8:56am

I was diagnosed with MG at 21 and am now 69. For decades I had very serious difficulty walking, chewing, keeping my eyelids up, double vision etc. But in 2017 I realised that I had no symptoms even when I forgot to take Mestinon (by then 30mg per day). Seemed incredible. I still have no symptoms of MG, although I currently take Mestinon each day after a suggestion that the MG could recur. (I don’t know how reliable that info was though.) However my blood test still shows a level of 5.5 anti-receptor antibodies of acetylcholine. A positive result is 0.40. Is my lack of any symptoms surprising? Has anyone else had this experience?

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Hi @pmci, allow me to tag fellow MG members @skhollandmt @rambo77 @Erinmfs @ellen307 @pdietrich @lynnes @chorba @janyce who can share their experiences with Myasthenia Gravis.

You may also be interested in this related discussion:
– Myasthenia Gravis: Share your treatment journey https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/

– Double Vision and Autoimmune Diseases like MG: Can anyone relate? https://connect.mayoclinic.org/discussion/double-vison/

REPLY

I was diagnosed with MG at 21 and am now 69. For decades I had very serious difficulty walking, chewing, keeping my eyelids up, double vision etc. But in 2017 I realised that I had no symptoms even when I forgot to take Mestinon (by then 30mg per day). Seemed incredible. I still have no symptoms of MG, although I currently take Mestinon each day after a suggestion that the symptoms could recur. (I don’t know how reliable that info was though.) The weird thing is that my blood still shows a level of 5.5 anti-receptor antibodies of acetylcholine. A positive result is 0.40. Is this disappearance of symptoms unusual? Has anyone else had this experience? Does anyone know if the symptoms are likely to come back?

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