Quote:
Originally Posted by Stellatum
Hi, I'm seronegative too (tested three times, plus once for MuSK and once for LEMS). My eyes are almost normal. My arms and legs and neck (on and off) are weak, and the muscles in my sides are weak so that I sometimes wobble back and forth from the waist up as I walk. Sometimes my legs get so weak that I slowly, and very gracefully, collapse to the floor. I sometimes choke on liquids. My balance is terrible.
I stopped taking the Mestinon. It really doesn't seem to do anything for me, and it makes my left eye hurt. I have been on Imuran for three months, and two neurologists think it will put me into remission, but that I won't notice any improvement until the end of the year.
I had one course of IVIG, which seemed to make me quite strong for a few weeks. Then again, I am sometimes strong for a few weeks for no apparent reason. I always crash at the end of my cycle (I'm talking about female hormones) and then get better, but never all the way.
I had three SFEMGs: the first was borderline, the second was mildly abnormal, and the third, done by a different doctor, was clear enough to get me a diagnosis.
Abby
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Hi Abby,
I was tested a few times too. I wish something concrete would show up but I know how I feel. For a while, I really tried to convince myself it was in my head because I thought maybe that the Neuro thought it could be but I KNOW it is not. The EMG I had was a waste of time and money because they didn't test the muscles where I feel the most weakness. But I trusted that the docs etc. knew what they were doing. IVIG would not be an option because I do not want any type of blood product from someone else. And I understand that its only a temporary help. I am curious about the Imuran. Did you try Prednisone or is the Imuran a better choice? Will wait to hear from you. Thanks so much again, Hope you have a good day.
Blondieslp