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CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
Autoimmune Diseases | Last Active: Oct 13 3:46pm | Replies (312)Comment receiving replies
How did you all get diagnosed with CIDP?
I have been trying to get help for my husband's peripheral neuropathy for 7 months!
He has had the nerve test and he does have PN but I need to know WHY!!
He needs to get better with his pain and walking!
I cannot find a doctor to do a nerve biopsy.
He already had a spinal tap that shows elevated protien.
MAYO in AZ is not taking new neuro patients!
Replies to "How did you all get diagnosed with CIDP? I have been trying to get help for..."
Try Mayo in Rochester MN my understanding larger clinic. I don’t know where you live but Dr Anne Oaklander practices in Boston, Florida and one other state. It’s frustrating trying to get medical treatment for this.
Has he had the skin biopsy? Had it done twice progressively worse second time.
There are several different causes for neuropathy. Chemo,
Medication induced like statins, idiopathic and autoimmune.
Go to the list medications. Gives other information https://www.foundationforpn.org/wp-content/uploads/2016/10/Medications-that-Can-Cause-Peripheral-Neuropathy.pdf
Sounds like he has checked all the boxes for CIDP already.
Try to get an appt with neurologist, Dr. Dai at Rust Medical Center in Albuquerque, my doctor. Sounds like he should be on IVIG or SCIG like me.
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Try looking for a neuromuscular neurologist. That’s what I was told along with immunologist. These doctors don’t like to order test. I am talking to my neurologist about testing by spinal tap for CIDP. This is mainly a men’s disease. 96% are men very few for women. That’s according to statistics