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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
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.