I went out of state to get evaluated by a specialist who focussed on nerve problems. He did an EMG of arms and legs which were normal and said afterwards that there was no point in doing any other testing (including SFN biopsy) as he didn't see what it would accomplish. When I brought up that I had celiac disease, he questioned the diagnosis, and when I said it was confirmed in 2002 with biopsy and blood work, and said I had concern as to whether the symptoms were from celiac, he said neurological symptoms in celiac were "controversial" and the conversation ended there. At that point I did not have the energy to disagree with him, and just left when the appointment was done. I am feeling very discouraged right now, especially since visual problems related to optic neuritis are worse which are my primary concern. Every time I go to optic neurologist in my home state, he tells me in 3 months I'll improve, in 3 months I don't, then get another episode and vision gets worse, go back to him, and the same repeats.

Update:

Went to other specialists and ignored the neurologists.

Found out:

Have fat soluble vitamin deficiency, including vitamin A deficiency, despite adequate dietary intake, which apparently was discovered as early as 2016, but no one told me about it (until now).

Got biopsies for SFN from dermatology, waiting on results. GI did genetic tests, so on top of previous positive biopsy and blood test, I also have gene for celiac. Was told I'd be referred to neurologist on east coast who deals with celiac-related neurological sx, if neurological symptoms are determined to be celiac-related.

It is a long and exhausting journey to find any help for chronic conditions that cross specialties.

We feel so alone, and doctors can be so arrogant and ignorant, it is criminal.

Again, I stress the importance of Medical Centers. Yes, there will be difficult doctors there, as well. But you have a better chance of finding well educated doctors, and the Medical Centers demand feedback from patients for almost every visit or procedure

I just completed an extensive survey related to recent esophageal treatment I had with anesthesia at a University of North Carolina Medical Center affiliated facility.

The questions included cleanliness and care for my well being. But there was a long section with questions like: Did your doctor tell you what to do if you had nausea and vomiting after your procedure? The the next question: Did you have nausea and vomiting after your procedure.

Trust me, when every single person you deal with KNOWS there will an opportunity for you to give both survey feedback and open-ended comments on your treatment, they will be very careful to treat you well.

I'm sorry you are learning how difficult this is, but it sounds as if you are on your way to treatment and care that will help you.

Regards, ElaineD