Quote:
Originally Posted by seishin
So I saw the much anticipated MG-expert neuro that local MG'ers have raved about. In my opinion, the guy wasn't the expert I'd been led to believe (although he sees 50-60 MG patients). He told me point-blank MG doesn't cause urinary incontinence, never has pain associated, said that everybody responds to Tensilon (himself & my friend included),...
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Hi there, just to "reassure" you: I really do have MG (I have positive anti achr ánd anti musk, positive EMG and sfEMG, thymushyperplasia and more obvious stuff). I do not however have clear textbook MG.
I do have pain in the muscles (if you're not up to paralizing weakness, still use your muscles, but they get tired very easily, for me it always feels like exercising too much, a.k.a. musclepain).
I did not have a positive reaction on Tensilon.
And, I've also been to the "professor specialist of specialist, god of MG" where I lived. Most of his patients told me to, so I tried.
But it was a failure.
I'm not sure, but I think the urinairy problema can be caused by mg. Directly because the pelvic diaphragm could get weak (I'm not sure if these muscles are involved though!), or indirectly because of medicine, like mestinon is known for it.
So, well, hang in there. There is no such thing as one MG patient. Everyone has different weird stuff.
