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Posts (4)

Apr 19, 2017 · Anyone been diagnosed with CIDP? It's very rare in Neuropathy

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?

Nov 21, 2016 · Anyone been diagnosed with CIDP? It's very rare in Neuropathy

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.

Nov 21, 2016 · Educating others on autoimmune diseases in Autoimmune Diseases

Hi Jamie, Thanks for the reply. I’ll post my message as you suggested.
The pain was just in my right arm post infusion.
Thank you!
Don

Nov 19, 2016 · Educating others on autoimmune diseases in Autoimmune Diseases

Hi @bburleson1, I just joined Connect, and saw your post 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.