New Member
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Join Date: Jul 2009
Posts: 4
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New Member
Join Date: Jul 2009
Posts: 4
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In need of help!
I’ll try to summarize as briefly as I can. 2003 was the first onset of symptoms in which I had left blurred vision, left hand paresthesias, left arm weakness, and left foot paresthesias. During that episode I had an extensive work up for MS but my MRIs and LP were all clear. After about 4 months all the symptoms started to slowly settle down and fully disappeared by 6 months. Then in 2007 I developed a flare of the same symptoms again. This time I was treated with a higher dose of oral steroids which I responded well to and the episode promptly went away within a few weeks. Sine February of 2009 though I’ve been dealing with all the symptoms again (plus some). In march my neuro felt that I had graves disease because my left eye was bulging forward (however he ignored that I was having trouble keeping my right eyelid open). Antibodies and a thyroid scan came back positive for graves disease but when I went back for my follow-up my eye wasn’t protruding so he changed his mind on the diagnosis. At my request my primary MD ran acetylcholine antibodies (my neuro did not agree with me on my concern for myasthenia). The modulating came back positive at 29 but the blocking and binding were negative. Both my primary and neuro interpreted the labs as negative for MG (is this right?). Since then my symptoms have continued to progress over the last few months. My neuro had presumed an autoimmune induced encephalopathy and started me on high dose steroid infusions with an oral prednisone taper starting at 100mg. The IV steroids had an amazing effect but this was short lived and only lasted a few days. Now all my symptoms are back and then some (mental confusion, scattered paresthesias, weakness on the left side especially in my cheek and forearm and hand (oh by the way I‘m left handed) muscle aches in my neck chest and shoulder, intermittent double vision in my left eye, generalized blurred vision, and extreme fatigue requiring daily naps). This week my neuro changed his mind again and now says my “dopamine levels must be low” he didn’t bother to order an EMG or anything that I would have expected him to do. Instead he prescribed Wellbutrin and Provigil med trials. I’m waiting for an appointment for a 2nd opinion but in the meantime I was wondering if any of you had any thoughts. Thanks so much for your time.
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