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@piross1528

I busted my hump to get an appointment at Mayo Rochester. I finally got in. So far, of all the places I have been seen-the Mayo doctors have been the most dismissive. The Doc in Rochester basically told me there was nothing I could do and threw out the idiopathic term immediately. He gave little effort to find the etiology and refused to see me more then once. On a scale from 1-10, I give the peripheral nerve "team" a 1, because there was no team effort. At 36, as someone with a M.S in bio (biomedical sciences focus) and having been in med school for a short while, I can tell you he dismissed me and sent me home with band aid. I have read over a 100 SFN articles on PubMed to try and uncover the original cause. The doctor was knowledgeable. He was smart. While it is true that at the time of my evaluation, I had had an extensive workup, sometimes tests need to be repeated, and sometimes there are rare causes of neuropathy. That is why I pushed so hard to get in--to dig deeper in the hope find an etiology. With the level of education I have, there is nothing a doctor can say to me that I won't understand. So why is all that important? Because I know there was more he could have done. Currently, there are many autoantibodies suspected in being involved in SFN (TS-HDS, FGFR3, D1-Antiplexin) and there may be more. I brought this up and all he said was "There are a lots of antibodies involved in autoimmunity" --thanks, but I already knew that. I went to Mayo hopeful that I would be learn of the latest research, and even more suspected causes that I was not privy too because the research is unpublished. He could have looked for clinical trials, he could have consulted other doctors who may have other ideas, he could have looked deeper into auto immune causes or even referred me. He told me that we should just wait and see. It has been a year since I have seen him, and the SFN has progressed and nobody seems to know why. I wish I would have been seen by team of doctors, but maybe my situation is not dire enough. My main symptoms are itching and burning on my limbs. I hope you find answers, and I hope that you have better experience than me.

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Replies to "I busted my hump to get an appointment at Mayo Rochester. I finally got in. So..."

I had the same experience. I was pu through many tests, including EMG and the conclusion was that i had idiopathy peripheral neuropathy. Nothing we can do. Take gabapentin and have a good day. Ti have read several artcles from neurologists how the Covid vaccine has caused more neuropathy, but my neurologist at Mayo says not Covid related, but has no idea what has. Very frustrating. Mayo is very goo, but for my situation, service has been less than stellar.