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Foxauthor
@foxauthor

Posts: 16
Joined: Oct 28, 2011

Anyone been diagnosed with CIDP? It's very rare

Posted by @foxauthor, Oct 28, 2011

Has anyone on this feed been diagnosed with CIDP (chronic inflammatory demylenating polyneuropathy)? 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?

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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.

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!

@ginifuller

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!

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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.

@kdp3186

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.

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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

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

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?

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

@bburleson1

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

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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.

Welcome new members @gratefulone @jazzy27 @lindy1956 and @suziep. I invite you to join this discussion about CIDP (chronic inflammatory demylenating polyneuropathy).
Why don’t you start by telling us a little bit about yourself.

Beverly (@bburleson1) and Don (@dlcutler): How are you doing? Don, what did you find out from your visit at Mayo? Beverly, what did you learn about stem cell therapy for CIDP?

Yes, i was diagnosed a month ago and can’t wait to see what helps others as mine has progressed rapidly.

@colleenyoung

Welcome new members @gratefulone @jazzy27 @lindy1956 and @suziep. I invite you to join this discussion about CIDP (chronic inflammatory demylenating polyneuropathy).
Why don’t you start by telling us a little bit about yourself.

Beverly (@bburleson1) and Don (@dlcutler): How are you doing? Don, what did you find out from your visit at Mayo? Beverly, what did you learn about stem cell therapy for CIDP?

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Since I posted about CIDP I have been rediagnosed with POEMS syndrome even rarer than CIDP. It was discovered I had a tumor on my pubic bone and I have had radiation treatments . POEMS is in the Myeloma family. I am still recieving IVIG, taking Prednisone and Cellcept for my condition. I don’t know a lot about POEMS, but the tumor was considered a cancer plasma cytoma..and Myeloma is a blood type cancer.

@colleenyoung

Welcome new members @gratefulone @jazzy27 @lindy1956 and @suziep. I invite you to join this discussion about CIDP (chronic inflammatory demylenating polyneuropathy).
Why don’t you start by telling us a little bit about yourself.

Beverly (@bburleson1) and Don (@dlcutler): How are you doing? Don, what did you find out from your visit at Mayo? Beverly, what did you learn about stem cell therapy for CIDP?

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My diagnosis at the Mayo Clinic in December was central sensitization disorder, but having since returned home and had more symptoms (hyperreflexia, limb pain, pronounced clonus) a local CNS specialist believes I have either spastic paraplegia or primary lateral sclerosis. Since this is my fourth diagnosis, (ALS, CIDP, CSD, HSP) I’m not sure what to do at this point. Maybe a return to Mayo?

@colleenyoung

Welcome new members @gratefulone @jazzy27 @lindy1956 and @suziep. I invite you to join this discussion about CIDP (chronic inflammatory demylenating polyneuropathy).
Why don’t you start by telling us a little bit about yourself.

Beverly (@bburleson1) and Don (@dlcutler): How are you doing? Don, what did you find out from your visit at Mayo? Beverly, what did you learn about stem cell therapy for CIDP?

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Don, being at a loss about the next step is frustrating. Perhaps a return to Mayo might be a good next step. I’m tagging @dawn_giacabazi and @kdubois on this conversation. While they don’t share your diagnoses/symptoms, they too have had to persevere along with their medical team in their search for answers . Perhaps they have some thoughts or experiences to share.

In the meantime, you may wish to also see this discussion:
– Has anyone been diagnosed with Central Sensitization? http://mayocl.in/2orjcYy

Don, I completely agree, it would be a good time to revisit your medical team at Mayo Clinic. There certainly has been enough time for disease process to advance. With their ability to take a closer look with a more collaborative approach combined with your medical records back home, you can be confident it should be a trip with answers.

Prayers
Dawn

@colleenyoung

Welcome new members @gratefulone @jazzy27 @lindy1956 and @suziep. I invite you to join this discussion about CIDP (chronic inflammatory demylenating polyneuropathy).
Why don’t you start by telling us a little bit about yourself.

Beverly (@bburleson1) and Don (@dlcutler): How are you doing? Don, what did you find out from your visit at Mayo? Beverly, what did you learn about stem cell therapy for CIDP?

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Hi Don @dlcutler, I agree that a revisit to Mayo may be the best action to take right now. Though you were just there last December, it’s not too soon since symptoms have progressed. I actually went there in September and December 2015 and then January, March, August, and October 2016. Sometimes as symptoms come, go, and change, and other diagnoses are given, we need to revisit so that our doctors can reassess to properly treat us. Doing this has absolutely helped significantly for my health, especially given their collaborative approach that @dawn_giacabazi mentioned.

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