Reply To: Anyone with Sensory Predominant CIDP?

Yes, my CIDP symptoms stayed primarily in my sensory nerves for the last 5 years, and contributed to the very slow CIDP diagnosis, which didn’t come until a month ago.

I had progressive nerve pain in my feet, starting in big toes and steadily moving upward (all toes, balls of feet, etc.). I tried to chase down the cause with several doctors, but the diagnosis remained Peripheral Neuropathy Idiopathic (unknown).

But over the past year, the pain and progression steepened, and numbness went all the way through the top halves of my feet. Everyday felt like there was a war in the tops of my feet! I pushed and had another EMG done about a month ago, and several of my amplitudes fell to near zero. I also lost reflexes in arms. All within 6 months. This spurred my neurologist to diagnose me with CIDP and now I’m taking Mycophenalate and Prednisone, and I’ll soon start IVIg.

I feel lucky – my muscles even in my totally numb painful toes work at 90%. The downside has been that my sensory-primary impacts made my CIDP even more difficult to diagnose.

I’m three weeks into the Prednisone 60 mg and it seems clear that the war inside my feet is no longer being waged. The pain is less. I’m optimistic for IVIg to work as well.