CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Hi Raphy, as @becsbuddy suggested, I have moved your to this existing discussion group about CIDP so you can connect with other members like @sherlock @txamo @ericd47 @jtbt0406 @vicki127 @tab4025 and others.

How is Cellcept working for you?

Dr. just increased it from 1500 to 2000mg. I see no benefit at all. But I've been taking it for 15 years.

I have been treated with IVIG for 5 years. Prior to this, my pain level would be 9 each day and I sometimes wanted to cut off the offending leg. Already had gabapentin at 3200mg per day. Now my peak pain is 7. Recently had a neurostimulator embedded to treat pain from spinal injuries. It also helped the nerve pain and I have been able to lower the gabapentin to 1600mg per day.

Did you have issues with insurance since IVIG is extremely expensive. Secondly do you have a port for your infusions?

Medicare covers the use of IVIG for demyelinating peripheral neuropathy, and TFL (military) covers any left over. I was having a lot of problems setting an IV, one time taking an hour, and we discussed a port. Decision was not to have one. And then I stopped drinking coffee before the first day of the IVIG and it worked fine. Set the IV so I could leave it in over night and generally, almost always it was good enough on day two. And I could drink my morning coffee before heading for the infusion center.

Thank you for sharing. Over the last 3 years I have been diagnosed or “suspected” of having CIDP, CMT, polyneuritis multiplex, and other.

@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?

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

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.

“Sauce for the goose” as idioms would have it