Member
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Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
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Member
Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
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Hopeful, I am sorry that you are dealing with this. The hardest thing in the world is having an inconclusive diagnosis and being disbelieved by doctors. It makes you feel so powerless.
I have also been seen at Hopkins. The doctor there basically agreed with my neuro that it was CMT and further testing was unnecessary since there is no treatment, but my EMG/NCS and skin biopsy both showed severe neuropathy. I do think they get carried away with their own reputation, the doctor claimed to have gotten a reflex from me, something no doctor in my entire life, even as a child, has been able to do. Neither my husband nor I noticed it, but he seemed excited about it. My EMG/NCS there was slightly less dire than the results from the local neurologist. He also found muscle atrophy. The most upsetting thing about being seen there was when the doctor told me I could discontinue IVIG as it probably wouldn't help. I have never been on IVIG. He didn't read my chart, evidently. He also seemed not to believe me when I said I wasn't taking it.
Both neurologists tossed me back to my PCP for pain management.
I would assume that your neurologist's test results are accurate. Skin biopsies are read in a strange way where the results have to be really bad to be positive. Was the Hopkins biopsy barely within normal limits? Mine does not use numbers but uses the word "devoid" of nerve fibers, so perhaps yours was similarly pass /fail?
It is terrible that your own doctor is taking that attitude about the results from Hopkins. That is an unhelpful consequence of their reputation in this area. As much as they are told to believe the patient and accept their experience, doctors can't seem to help themselves from focusing on test results and being impressed by big names.
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