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I was so happy to find this site. It’s always great to find others who are struggling with similar issues. I have been living with monoclonal gammopathy of undetermined significance (MGUS) for 6 years, was diagnosed with POTS about two years ago, and small fiber neuropathy that they believe underlies autonomic neuropathy (affecting GI motility as well as causing POTS) just last year. Other “incidental” findings include a very slightly elevated alpha fetoprotein (AFP) something that is normally only elevated in folks with liver cancer which I do not have (nor cirrohsis, etc.).
My reason for writing now is because my spouse and I are moving to Portland Oregon and I am in need of a neurologist who specializes in POTS and preferably dysautonomia. I’m not having any luck and hoped someone might know of a doctor. I understand there is a cardiologist, Dr. Emilia Arden, in the Portland area but my doctors here in NYC would really like me to have a neurologist whom I am in touch with regularly. As well as an immunologist. Sigh… So I would welcome any and all input.
Thank you so much!
I put Portland into the search area above and it brought up 4 posts, one of which talked of a POTS savvy cardiologist in Portland:
It might be a starting point.
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