rockenmamaof5 Posted May 3, 2015 Report Share Posted May 3, 2015 If so just wondering what the root cause of the myopathy is. I was diagnosed with Myasthenia Gravis in early Jan. But after 3 ivig's and all the meds that I'm taking, my neurologist is questioning the diagnosis since I haven't responded like she would have expected me too (she's a good doc and at a top hospital) Also I now have been diagnosed with Dysautonomia so now they are starting to think Mitochondria Disease as a possibility. I have some top notch doctors who realize that I'm a difficult case, too much for them so they will be sending me to John Hopkins once I've had my muscle biopsy in a week or so and my Single nerve fiber emg. I know that eventually everything will get sorted out and I'll get whatever diagnosis/s. But until then I'd like to find other individuals that are dealing with similar issue's. I've been out of my wheelchair for about 2 weeks and am trying my best to keep out of it, but it's hard trying to figure out the balance on my own. I don't know anyone or have anyone really to talk too that knows what I'm going through. Thanks in advance!Pam Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 3, 2015 Report Share Posted May 3, 2015 Hi there! I don't have this issue but due to other concerns, I was tested for the various myosites. Has some for of myosites been ruled out? (Polymyositis, dematomyositis, etc.?) Quote Link to comment Share on other sites More sharing options...
rockenmamaof5 Posted May 4, 2015 Author Report Share Posted May 4, 2015 Hi there! I don't have this issue but due to other concerns, I was tested for the various myosites. Has some for of myosites been ruled out? (Polymyositis, dematomyositis, etc.?)Yes I have been multiple times. Thanks Katybug Quote Link to comment Share on other sites More sharing options...
Natops Posted May 5, 2015 Report Share Posted May 5, 2015 Have your docs been able to identify any antibodies? Quote Link to comment Share on other sites More sharing options...
rockenmamaof5 Posted May 5, 2015 Author Report Share Posted May 5, 2015 Have your docs been able to identify any antibodies?I was borderline positive (according to the results sent back from Mayo I'm positive) for Modulating AchR antibodies Quote Link to comment Share on other sites More sharing options...
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