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Old 06-09-2016, 12:12 PM
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echoes long ago echoes long ago is offline
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echoes long ago echoes long ago is offline
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Join Date: May 2008
Location: new york
Posts: 1,581
15 yr Member
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Quote:
Originally Posted by northerngal View Post
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
thank you for taking the time to relate your experiences at Mayo Clinic. This type of information is invaluable for those trying to determine
their own course of action.
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"Thanks for this!" says:
cbsiete (07-29-2016)