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CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
Autoimmune Diseases | Last Active: 11 hours ago | Replies (261)Comment receiving replies
Becky,
I have seen 5 neurologist in both private to large hospital settings . I go to Mayo Scottsdale in August. “Concrete “? No!
Infuriating? Yes! It was found I have a high titer FRFG3 antibody that lends itself to neuropathy. Treatment = IVIG. Continuously denied by BCBS as not medically necessary but what I have found is the submitted diagnosis and symptoms were not supported and the appeal process was handled by a 3rd party which never communicated. The physician blamed my insurance and told me to go on high dose prednisone which I denied because the high dose steroids x12 months I had just come off only elevated my sugars
Rant over
My rheumatologist, after ultrasound, Xray,bloodwork, and exams informed that there are no issues there.
CIDP was not supported by neuro ultrasound
Cmt was not supported by genetic trace even though all the physical signs and peripheral signs are there
Hopefully Mayo can bundle all aspects under one roof
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I personally have not found any of the doctors at Mayo in Scottsdale to be that good. I would say the brightest neurologist in the Scottsdale area, and literally all of AZ, is Dr. Seth Kaufman. He was trained at Mass General and will definitely try to get to the bottom of any issues dealing with neuropathy. He is one of the most thorough neurologists I have ever seen. The only issue I have with him is is bedside manner.