Hi janie. Thanks for the response. I get worried when doctors start writing wrong things, especially since I've had family members who went through misdiagnosis nightmares before. In a small town so doctors are very cliquish here and tend not to disagree with each other.
Fortunately the celiac diagnosis is not in question (I had blood work and biopsy to confirm years ago) and I also have atypical celiac. Several doctors, although not the neurologist, pointed to celiac as being potentially the cause of the neuropathy, which I agree with. But I was also told they can't confirm that I even have neuropathy or how to treat it without a test showing objectively (e.g. blood or biopsy) that I have neuropathy, nerve or tissue damage.
I noticed you have small fiber neuropathy diagnosis in your tag. This is something I wanted to ask to be tested for since I have read papers on SFN and Celiac disease. I am supposed to get muscle/nerve biopsies and nerve conduction test out of state, but I think these do not detect issues with small fibers.
Quote:
Originally Posted by janieg
Hi wf,
Sorry to hear of your bad experience with the neuro. Unfortunately, it's all too common.
I experienced doctors disagreeing on things, and they are never hesitant to correct things on records. My neuro diagnosed me at one point with thoracic outlet syndrome, and put in my record. The spinal specialist disagreed, and removed it. When I went back to the neuro, he put it back in. After he retired, his replacement took it back out. 
If your neuro is in a network, any other doctor in the network can adjust diagnoses in your electronic records. His comments/notes will remain and future doctors can see them, but I've found many will make their own decisions and not take them to heart.
I should mention that when I saw a gastro at some point after my neuropathy set in, the first thing he did was test me for a "silent" form of Celiac since he said that can cause neuropathy.
janie |