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Anyone been diagnosed with CIDP? It's very rare

Autoimmune Diseases | Last Active: Oct 7, 2024 | Replies (153)
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@lisalucier

Hi, @sdswoboda53 - welcome to Mayo Clinic Connect. I'd be scared, too, if I began having balance issues out of the blue and falling. I am glad you do have a diagnosis at this point with the chronic inflammatory demyelinating polyneuropathy (CIDP) your doctor indicated.

I'd like to ask members @sherlock @mayor47 @jazzy27 @vander626 @jgk85 @jutty and others to return and share about what your doctors may have explained to you about what CIDP does to the body, and also provide an update on how you are doing currently. I'd also invite @johnbishop and @hopeful33250 to participate in this discussion.

While waiting for them to join in, here are some resources on CIDP you may find helpful:

- CIDP information from the National Organization for Rare Disorders https://rarediseases.org/rare-diseases/chronic-inflammatory-demyelinating-polyneuropathy/

- A Mayo Clinic Proceedings paper on CIDP explaining its history, diagnosis and management for medical professionals https://www.mayoclinicproceedings.org/article/S0025-6196(18)30236-2/fulltext

@sdswoboda53 - what did your doctor prescribe as far as treatment for your CIDP?

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Replies to "Hi, @sdswoboda53 - welcome to Mayo Clinic Connect. I'd be scared, too, if I began having..."
sdswoboda53 | @sdswoboda53 | Jan 30, 2019

I'm doing IVIG every 3 weeks. I couldn't take gabapentin.

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sdswoboda53 | @sdswoboda53 | Jan 31, 2019

I opted for trying physical therapy first. After that it was gabapentin, which made me sick. I started IVIG infusions mid November. I had a bad fall on 12/15/18 which resulted in a concussion and a very sore body. And on January 2, 2019 I fell again. So now I have to get an orthotic for my left foot.
The pain I have from the CIDP on top of all the issues from fibromyalgia is really hard to cope with. My fibromyalgia pain is 24/7/365 for almost 20 years. I also have bulging discs in lower back and degenerative disk disease, which I have treated at MI Pain Clinic. Tack on anxiety and clinical depression and you have about 75% of my medical issues. I have a supportive as he can be husband. And I have my faith in God which is extremely important to me!
I'm so glad I found your site... I rely on Mayo Clinic for health information. Thank you for allowing me to be part of Connect. Hoping to learn from others and be helpful if I can.

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tjp4 | @tjp4 | Jun 28, 2019

I was just diagnosed and my doctor wants to use gamunex which is very expensive. My copay per infusion is almost $3,000. I can't afford this. Are there cheaper alternatives?

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