Quote:
Originally Posted by Stellatum
I'm still in the "trying to get diagnosed" stage. I had a single-fiber EMG yesterday, which the doctors said was "borderline." So I'm waiting on the antibodies test, which takes a long time to come back. If that's negative, it will be really discouraging to me, since no one has any other ideas on what may be causing my symptoms.
They did the SFEMG on a muscle in my forearm. That's not a muscle that's been giving me trouble, and they got me at my "good" time of the day. I'm hoping that those are the reasons that the results weren't conclusive.
I have (so far) NO eye involvement--normal vision, no ptosis. I know that's unusual for MG. The muscles that are giving me trouble are in my legs and neck. I'm especially having trouble keeping my balance while walking.
I know that you all understand the frustration of the long process of trying to get a diagnosis. Any experiences you have with this sort of thing would be helpful. Thanks.
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I hope you do have clearly diagnostic tests. yet,
a small (but not negligible) percentage of patients with myasthenia will have completely normal tests. they also (not independent of it) tend to have a more atypical clinical picture.
I personally think that those patients have antibodies (or genetic abnormality) that is different then the typical MG. some will have unrecognized congenital myasthenia (which can present in adulthood), and other will have not yet recognized antibodies, and some may have a combination of both.
you have to learn your illness, and trust yourself and not accept unreasonable answers, and those that don't make sense. yet, be attentive to learn as much as you can from other patients and your physicians.
it may not be MG, but some other illness. but, then you should have some findings that would fit that. you can't have "nothing" unfortunately (even though I am sure you would be glad if you did).
or as once said to one of my neurologists- you managed to convince me that I don't have MG, but now can you please convince my illness.
alice