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Anyone been diagnosed with CIDP? It's very rare

Autoimmune Diseases | Last Active: 4 days ago | Replies (146)
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@minfromtexas

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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Replies to "I have a variant of CIDP and was getting IVIG infusions. They seemed to slow the..."
John, Volunteer Mentor | @johnbishop | Jul 10, 2023

Hello @minfromtexas, I'm not sure that @bburleson1 is still following Connect as they were last active on Connect in May of 2020. Hopefully other members may have some information on any new treatments or symptom management of CIDP. I did find an article on the topic that was last updated in May 2023 and might be helpful. It contains treatments, diet, outlook and more.

"A person with CIDP may benefit from a predominantly plant-based diet filled with colorful fruits and vegetables. Other beneficial foods include lean meats and fatty, low mercury fish, such as salmon."
--- What to know about CIDP: https://www.medicalnewstoday.com/articles/320724

Also noticed this 2023 article on your question that sounds interesting.
--- Repurposing MS immunotherapies for CIDP and other autoimmune neuropathies: unfulfilled promise or efficient strategy?: https://journals.sagepub.com/doi/full/10.1177/17562864221137129

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harley22 | @harley22 | Jul 11, 2023

I went through many rounds of IVIG infusions, and there were no improvements in my symptoms, so my neurologist discontinued them.

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