Interview with SFN researcher, Dr. Lawrence Zeidman (Reddit)

Dr Wilson. Cleveland clinic, Ohio

Unfortunately Ohio is no closer to AZ in the grand scheme of things.

I went to Boston to get answers on my neuropathy and I live in Texas..
The neurologist in Dallas are driving us crazy. There’s about 10 of us having problems with neurologist and they are all different doctors.

It seems like finding help is really difficult. I have had doctors lie to me and everything. My rheumatologist is now helping me.

My comment on distance was more about followup care. I would have no problem traveling to Detroit to see him but they cannot do remote followup care in AZ.

That’s the problem I ran into. I got my questions answered and she wrote my doctors a not so nice follow up letter about my neglect in care. That letter got my doctors moving. Now they are taking it seriously. I tremors caused by the motor neuropathy. I tested negative for Parkinson’s antigens. My hands shake so bad my husband has to cut up my food and I have to use a cup with a lid otherwise my water spills down the from of me. There are times I shake so bad I have to have my husband feed me. I don’t go out to eat anymore. Under motor neuropathy they say motor aka muscle movements. They don’t say tremors. I am glad she put it together for me. Due to her letter the rheumatologist is starting me on IVIG for CIDP. I was diagnosed with severe axonal sensorimotor peripheral polyneuropathy
Small fiber polyneuropathy dysautonomia
Cardiac autonomic neuropathy
Your organs have nerve fibers also.