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foxauthor

Has anyone on this feed been diagnosed with CIDP? It's very rare

Posted by @foxauthor in Brain & Nervous System, Oct 28, 2011

Has anyone on this feed been diagnosed with CIDP? It's very rare and not well known about. I can't even find it in the list of diseases on Mayo's site. It's on the web, and I am on the national registry with the GBS-CIDP national organization. Anyone else out there have it?

kdp3186

Posted by @kdp3186, Feb 18, 2015

Yes I was diagnosed with CIDP 7 years ago. When I was 16 I was diagnosed with GBS and in a wheelchair for 4years , and was finall diagnosed after continued problems.

bburleson1

Posted by @bburleson1, Sep 5, 2016

How are you today and where did your journey take you? I was diagnosed in June of this year 2016. I'm taking Previgen infusions and looking for recovery...You can also respond to me by private message. Beverly

ginifuller

Posted by @ginifuller, Sep 6, 2015

My son was diagnosed with CIDP just last week. He is in such pain and they are treating this with IV Immune Globulin so would like to know more about the disease and the treatment!

bburleson1

Posted by @bburleson1, Sep 5, 2016

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.

bburleson1

Posted by @bburleson1, Sep 5, 2016

I have CIDP. would love to share and get info from you.

colleenyoung

Posted by @colleenyoung, Sep 5, 2016

Hi Beverley, I'm glad that you re-animated this older discussion about Chronic inflammatory demyelinating polyneuropathy (CIDP). I'm also tagging members @mllucas @ginifuller @captnick @kdp3186 @5134177246 to bring them into this conversation.

Because CIDP is a neurological disorder, I have moved this discussion to the Brain & Nervous System group to help attract others who have CIDP. @bburleson1, you'll also notice that I removed your email address from your messages. To keep you from getting unwanted spam, we recommend members use the private messaging function to share email addresses. You can learn more about using Connect safely in our Community Guidelines https://connect.mayoclinic.org/community-guidelines/

I'll be very interested to get your impressions from the GBS/CIDP symposium in San Antonio, and hearing about what you learn. Are you participating as a patient delegate?

bburleson1

Posted by @bburleson1, Sep 5, 2016

I am attending as a patient and my daughter is going as an advocate, another set of ears, to learn what we can about stem cell therapy. It will be a long day but hopefully the benefits will outweigh the length of the day. I get fatigued easily with my condition thus far. Hoping for better days on down the road and wishing to share whatever type of hopeful hints that I learn. Thanks so much..Beverly

dlcutler

Posted by @dlcutler, Nov 21, 2016

I just joined Connect, and saw your post in another string about your post-infusion arm pain. In September I had two infusions of Flebogamma in my left arm and a month later, one in my right. After that one, I had intense pain just as you describe--elbow to wrist. Since I have nerve pain in all my limbs, I figured it was just more of the same, only it lasted longer. It's been eighteen days and the pain is better, but still there. Maybe it was triggered by the IV? Did you find out anything about your post-infusion arm pain? Also, I had severe headaches after each treatment. They lasted about two days.
I was diagnosed with CIDP in September, but my neurologist isn't sure about the diagnosis. My spinal protein levels were only modestly elevated (56), and I have hyperreflexia instead of hyporeflexia. Otherwise, I have nerve pain, muscle twitches, etc. So, I'm going to the Mayo Clinic next month. Hopefully they can figure it out.

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