Hi Greg! Thanks for commenting on my other post. I appreciate the response. I have had 9 rounds of IVIG (Gammunex-C) so far and at the very least, it seems to be holding it steady, so no progression. My last neurology appointment showed improved reflexes in my arms and legs so it must be doing something good. I cannot take steroids so I’ve not got to try it out, but I’m in no pain whatsoever so there is that. I tolerate the IVIG very well as long as I’m hydrating like crazy. Now, big question… When you say Sensory, do you have complete and constant lack of sensation? I have not been able to feel my feet and lower legs for years now, and by that I mean I could probably walk through fire and not even feel the pain. My fingers are just about the same although I register pain after a couple seconds. Like I put my hand in hot water and don’t realize it’s too hot until I end up with a burn. Are you like that as well? I also drop about every other thing I pick up. Can’t hold on to anything anymore. Very frustrating.

Hello!

My blood sugar is good. My fasting glucose is 91 and my A1C is 5. I’ve monitored it carefully over the years because I am overweight. It’s always been normal. My neuropathy started in 2004, around the same time I was diagnosed with Bipolar disorder and put on lamictal and wellbutrin. I’m not entirely unconvinced that there isn’t a correlation. I have seen some great improvement since starting IVIG in February. I do not take prednisone because I take lithium.

When I first started noticing the numbness, I went to a podiatrist. She did a NCS and determined that I had a pinched nerve in my lower back and that losing weight coupled with chiropractics and acupuncture should keep it from getting worse. It did not. Every chiropractor I went to (we’ve had several moves since) assured me that they could fix it. They could not. Every general doctor I went to said there was nothing they could do, and because I wasn’t B12 deficient or diabetic, it must be idiopathic. Finally, when my fingers started going numb my current GP sent me to a neurologist. She checked Sensory and motor function, gait, balance, reflexes and I had 23 blood tests done and another NCS. She was convinced I was b12 deficient because I didn’t fit in with the typical CIDP because of the lack of muscle issues. I was not b12 deficient. So she sent me to a more specialized neurologist. 13 more blood tests, another NCS and an electromyography and he decided I probably have a really rare form of CIDP called Sensory Predominant. But unlike most people with SP I don’t have the herpes virus… So who really knows. I just hope that the IVIG works and that at the very least, the feeling in my hands will return. I have not had a never biopsy yet.

I am in the US, and thankfully have fantastic insurance. I won’t pay a dime for anything. It’s not even subject to my deductible. I finally got the first two treatments lined up for next Thursday and Friday. Because I’m a big woman, I was told my treatments can take up to 8 hours depending on how I tolerate it. YIKES! That’s a long time to hang out with a stranger in my home. Lol. I will definitely keep you posted and you let me know how things continue for you. I can’t tell you how much I appreciate you responding to my post.

So do you feel like you’re getting anywhere with the plasma therapy? My neurologist told me I could regain full function but it may take years. I can’t do the steroid therapy because I take several medications that react because with Prednisone. Why did you only do too IVIG treatments? Did you have bad side effects?

Thank you so much for responding. 😀