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Anyone been diagnosed with CIDP? It's very rare
Autoimmune Diseases | Last Active: Oct 7 6:02pm | Replies (153)Comment receiving replies
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?
Replies to "Welcome new members @gratefulone @jazzy27 @lindy1956 and @suziep. I invite you to join this discussion about..."
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?
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
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.
i went Mayo twice. They are excellent but see you one time My neurologist diagnosed me 1-11. I started with symptoms 4-06. PLS is VERY DIFFICULT TO DIAGNOSE. I would rely on your neurologist, maybe it is too soon to diagnose you. Symptoms will tell the story over time.
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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.