Looking for answers. No diagnosis yet. What next?

Posted by curtj @curtj, Nov 19, 2020

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??

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@curtj

Colleen,
We finally go the results back and had a consult with the neurologist at Brigham's Women's Hospital yesterday. All test results were negative and it was determined that she does not have small or large fiber neuropathy. However her pain continues to be severe and we have her scheduled with a pain doctor tomorrow to see if we can get that under control until we can figure this out. I am wondering since she is on Lyrica for nerve pain, if that is making it worse or if she should come off from it at the very least. I am looking into CRPS to see if we can find a path to diagnosis. Thoughts?
Curt

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Hi @curtj ...
My second response. I am having the same exact pain so am soooo sorry and very interested in your finding answers.
I did try Mayo, but since mine is all connected to my spine, they just looked at my old MRIs and CT and said I'm not that bad, just find a local doctor and refused me an appointment.
Since I never had any pain problems before this, there has to be an answer.
I've researched a lot, but seems the longer you go, the more doctors respond with " may never be explained, live with it! "..
My idea, if you can question your docs.
Several conditions cause severe pain and damage if not treated. Myelitis, fungal, and shingles. All can be invisible, but are treatable. It seems they don't get treated until they have caused paralysis, or spine damage and can be seen on an MRI. Why they wait for severe damage to treat these , I don't understand. They must exist before they become a huge clump in your spine. You did say you had spinal fluid tested, so not sure what they tested for. They all seem to have a similar treatment. Kind of a flushing out of your system with IVs and meds. Maybe this treatment isn't covered by insurance unless they are seen on MRI to prove damage being done. I would give every last penny of my savings to try this for my pain.
I'm praying for answers for you soon. Please let me know if you find a good doctor willing to keep looking.
Seems like if there's a treatment to reverse paralysis, these treatments may reset your system s nerves somehow.
Good luck and thank you for sharing.

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