Quote:
Originally Posted by Aztecnitemare
Just want to add I've had some issues starting in 2009. I don't want to write a book about them and this journey I've been on. I'm sick of being told its in my head and the ending up hospitalized when I have a spell. Then they give me a trash can diagnosis because they don't know what's wrong with me.
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Join the club.
I first got a diagnosis of MG very easily, but I never was positive. As a result, other doctors said I wasn't really MG, and that stuck in my head. Then, there were all the negative tests, so I thought well. . .
However, on the other hand, there was something they could not explain. My body was responding to Mestinon, and they didn't have a reason for that. Plus, I have a thymus, but they were saying that is not a marker for MG.
Yet, they -- for years -- refuse to believe that I could be one of the 10 percent that is neuro-negative.
A bit off topic, my primary physician thinks I have Lupus, because I appear to have it to her. My sister was the first one who thought I had it, because I have the same symptoms as a co-worker of hers.
s it even possible I have two hard to diagnose diseases? My doctor showed me pictures of patients w/Lupus, and I have the same symptom (swelling, hair loss, swollen finger joints at the base of the finger, fatigue, and I used to have rashes -- not the butterfly one). I never showed positive for that. I guess I'm consistent like that - LOL.
The thing with these disorders is that it can take a long time.
I went back to my old neuro. He's semi-retired, and he referred me to another neuro. She was the one who shrugged it off and went with neuro-negative. Hopefully, you'll find some answers, OP, but you have to be consistent and willing to look like a hypochondriac.