Quote:
Originally Posted by DavidHC
Thanks. I read your brief post on the thread that I linked to in my initial post on this thread. I'm not sure if there's anything else on some other thread. I guess I'm most interested in your experience, the kinds of physicians you saw, the test they ran, and the results. My goal, if I were to go, would not be to repeat the many tests I've had done, but rather to run some perhaps rare tests not available here and to push toward a diagnosis of the cause, so etiology of the SFN rather than diagnosis of the SFN itself, which has already been done and is itself a symptom of a larger or prior disease process. Thank you.
|
I saw Dr. Dyck at Mayo. If you have already had a good work up, then most of the tests will probably be a repeat. The only good thing about it is the way they get everything done in a week---so for people with no diagnosis or access to get one in their area it is probably helpful.
I did not get any tests run there that I didn't have or couldn't have got from my own Dr in Ma. Our own doctors and hospitals could run any test mayo can--they might just have to send it out and it may take a little longer for results.
My own doctor thought Dr Dyck might have some insight on what was causing my peripheral neuropathy because of the voltage gated potassium antibody she discovered---like you I was looking for the underlying cause of the neuropathy, not just being told I have it.
He only told me "it was interesting" and told me I should continue with IVIG.
I did not learn anything from Mayo or Dr. Dyck that I didn't already know before I got there. They did do a sural nerve biopsy and a lumbar puncture at mayo which I had not had done before going.
Later on when deciding to try rituxin, my doctor in MA wanted to confer with Dr Dyck, he refused to give any imput over the phone, stating I needed to come back out there for advice-----even though my insurance company payed dearly for my visit, he had access all of the tests they had run on me and all of my medical history.
There is a lot of money in the testing and diagnosing --that is what mayo does, they are not there for you after though, unless you live there and they are your regular doctor