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Anyone been diagnosed with CIDP? It's very rare

Autoimmune Diseases | Last Active: Oct 7 6:02pm | Replies (153)
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@bburleson1

I have CIDP and have been receiving infusions of Previgen since July. I have my 5th infusion on Friday Sep 9th. I haven't had any results as of yet, however the visit with neurologist says my strength in my arms test better than in June. Evidently, the recovery is very slow.
If you want to send me a private message. I'm very interested in sharing and learning from other CID)P patients or caregivers. I'm going to a GBS/CIDP symposium the 22nd of September in San Antonio, TX they will be talking a lot about stem cell therapy for CIDP.

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Replies to "I have CIDP and have been receiving infusions of Previgen since July. I have my 5th..."
minfromtexas | @minfromtexas | Jul 10, 2023

I have a variant of CIDP and was getting IVIG infusions. They seemed to slow the progression of the disease, until Medicare changed standards and I no longer qualify for the treatments. Since stopping, my spasming and leg and foot pain have come roaring back. I can see the symposium was a few years ago...what have you learned since? New treatments...symptom management?

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