Anyone been diagnosed with CIDP? It's very rare

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.

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

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

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.

What do members take for daily pain relief to manage the Pain of burning tingling numbness and any else that the pain of CIDP causes. I get infusions weekly. I am tapering off Prednisones I take Gabapentin CellCept and Cymbalta and supplements that generate nerve reproduction. Any ideas and getting comfortable day in and day out.

Hi @jutty, I add my welcome. As @johnbishop suggested, I moved your message to this discussion about CIDP so you can meet others talking about symptom management. Please click VIEW & REPLY in the email notification to read all the past messages and get to know other Connect members with CIDP.

I was just diagnosed with CIDP but not GBS. I undwerstand they're related but what's point of linking GBS to CIDP?

I do and I've had it for about 16 years. it progressed very slowly over the years, but it has really accelerated for the past two years. Maybe age has something to do with it - I just turned 85 this month. But I was always a healthy, active athlete even in my senior years. I was adopted as a baby, so I know nothing of my family history. I had IVIG infusions for many years to keep the CIDP in check, but it became ineffective a year or so ago. So for the last 7 months I've had Plasmapheresis two days a month which seems to help somewhat. But it persists. I've been diagnosed with foot drop in both my legs, the right being the most debilitated. Consequently I have to wear a leg brace to maintain a normal gait. Fatigue is a constant. If it weren't for my pain medication and a prescribed stimulant and lots of caffeine, I probably couldn't function very well. I live alone, and can drive and manage on my own, but for how long is anybody's guess.
This is my first time to post on this site and I guess it's much longer than it should be, but I'm hopeful I can get a lot of feedback from other members who are suffering from CIDP.