Reply To: Hello from Houston

Its interesting how different neurologist treat CIDP. My course was prednisone, but I got worse. The doc sent me to hospital where I received 5 days of IVIG treatment which turned things around, all the while still taking 60mg of prednisone. Since my release, on January 6th, I’ve been on 40mg of prednisone, which will last at that dose for 2 more months, at which time he said we would taper it down over the course of 2 more additional months. I haven’t had IVIG since, though he said if things turn south, it would be used to once again turn things around.

Not sure what to expect in long term healing. My chiropractor said I complained of numbness in hands and feet beginning mid-August(but I had been feeling fatigued, with back pain for months earlier). By mid-September I wasn’t better and said go see my GP. He did blood tests which showed a crashed B-12 level. Low B-12 can cause numb hands and feet. 3 weeks later, another blood test, B-12 levels were back to normal, but my neuropathy was worse. Finally late October he sent to the neurologist. A week of tests were negative and by then it was early/mid November when I had a lumbar puncture which confirmed CIDP. So he put me on 60mg of predisone and said give it a month to improve. Unfortunately I got worse.

So the question is, how much irreversible damage was done in that period? He’s hopeful its minimal, but also cautioned that myelin repair only progresses at 1mm a day. Haven’t measured my legs, but that has to translate into 4-5-6-7 months!

I tried Gabapentin and was taking it up to last week, but it does absolutely nothing for me. I asked for some type of pain pill, but he doesn’t want to go the route. I’d sure like to! : ) I finish physical therapy next week and plan on taking the hospital up on a 60 day free membership for their gym.

If you’d like to get in touch, its ncc1701a “at” fuse.net