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CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Autoimmune Diseases | Last Active: 12 hours ago | Replies (261)
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@becsbuddy

@0iggy11 I, too, am an autoimmune disease patient and I know it takes forever to get a proper diagnosis. You say that you have been diagnosed/suspected of having many autoimmune diseases. Do you have anything concrete yet? Have you seen a rheumatologist?
Can you tell us more of your story?

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Replies to "@0iggy11 I, too, am an autoimmune disease patient and I know it takes forever to get..."
0iggy11 | @0iggy11 | Jul 9, 2021

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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