Looking for answers. No diagnosis yet. What next?
My wife has been in so much pain for the last eight months and no one seems to be able to figure it out. She has had two MRI’s, 2 CT Scans, Lumbar puncture, EMG and Tilt Table (autonomic) testing, over 70 blood test (everything from lyme, MS, Gillian Barre and multiple other test and four skin biopsies. We started at Dartmouth Medical with the majority of test and biopsies were sent to Mayo. We switched to Brighams Women’s in Boston because our experience with Dartmouth was horrible with the Neurologist telling her (on two occasions that they may never find out what it is unless they did an autopsy. (Yes that is what he said) Needless to say we were able to get into Brighams and they did additional testing and all the results for the most part are negative. She has extreme intense burning in her mouth, chest, arms etc. and the pain migrates all over her body. She has been ruled out small fiber and large fiber neuropathy. She is ultra sensitive to medications and can’t tolerate Gabapentin, has issues with pediatric doses of Lyrica and has tried Xanax to help her sleep at night but can no longer take that because of side effects. Two questions I have:
1. The lab results indicated that the biopsy was taken on thigh and calf when in fact it was her wrist and arm above her elbow. Would the results be different when they indicated a different part of the body?
2. Would Mayo or John Hopkins look at all test results and notes without seeing her for a second opinion? With over 900 cases of Covid with 900 employees of Mayo, not interested in diving into the thicket of the pandemic.
We are desperate to find out what this is and how we can get her some safe relief. Anyone??