@lahjuly4 Hi Liz-
You sure have been through a lot. Do you know why Mayo declined to see you? Perhaps dig into the reason and go from there.

I have experienced much of what you described. I am 44 now and started going to doctors for headaches, irregular heartbeat and “IBS” since my early 20’s. I was diagnosed with fibromyalgia in Aug 2021 then went to a neurologist who did the skin punch biopsy and diagnosed me with SFN/autonomic dysfunction. I asked the neuro if that meant I did not in fact have fibromyalgia and he said the neuropathy caused fibromyalgia. I haven’t asked my Mayo neuro that question yet but I will on Friday when I see her.

Have you been tested for every autoimmune disease under the sun? My Mayo neuro said it’s rare that someone my age (who has likely had this for many years) would have SFN without an underlying cause, so she has been testing me for all kinds of things. I wonder if you could have an underlying cause.

What I like about Mayo is, while my neuro is my main doctor, she partners with all the departments/specialists to make sure I get the care I need. I recommend that you call Mayo to inquire why you’ve been declined and assuming you can get past that, request an appointment with neurology. As you mentioned, you need multidisciplinary care and Mayo certainly covers everything. The neurology department will partner with others there on your behalf and guide you in the right direction.

Maybe you can give Mayo Rochester a call (507-538-3270) and inquire about an appointment with their neurology department. Even if you have to be placed on a waitlist, it would be worth the wait.

Will you let me know if you call them and the outcome? I can only guess you’ve been declined because of either insurance or patient capacity limits.

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