Jim – Oh, dear ! Talk about taking the good with the BAD! Heightened nerve pain and EXTREME lower leg numbness has really affected my walking, but your mention of “shaky nerves” confirms that this is a common side effect. So far, other than nerve pain I have the fat face happening (but, actually – it makes me look younger ! Trying to figure out a way to keep that going).

I do love hearing that it STOPPED the CIDP and truly hope that continues while you deal with all of the other problems: At least they are “treatable” !

Thank you again!

Renee

Hi Helga … I believe I’m in a similar situation. I had very gradual progress for many years with nerve pain in my toes and left hip. Suddenly a year ago pain accelerated in feet and legs, back and hips. Three EMG’s over the past yea show axonal dying back that is actually neuromuscular: my calf muscles continue to shrink even though I am walking and working out as much as possible.

I am told there is nothing to be done, except hope that I don’t experience another “accelleration”. They did not diagnose it as AMMAN. We tried one round of IVIG (which the insurance company is refusing to pay). I did improve a couple of weeks later but was told by two nuero’s that “there’s no point in continuing”.

I am very weak in legs and core and balance is very poor. Numbness from toes to knees is severe (feet feel like cardboard when I tap them together). I got off of the pain killers and keep my mind busy to deal with the pain and weird sensations. I highly recommend physical therapy … it really and truly helps you feel more normal and you CAN improve your balance.

Has this affected your hands? I am dropping things like crazy and everything feels very smooth. Also, get very severe cramping in fingers and have sore thumb joins that fluctuate between mild and severe pain.

Thanks in advance for any info … and wishing you the best!

Jamierez68- thank you for sharing your story. I am almost 12 months into dealing with progressive axonal polyneuropathy that three neurologists tell me is untreatable because my spinal fluid and nerve biopsy are normal. I did receive one IVIG treatment that did not seem to “work”. Did you have a confirmed auto immune condition?

Thank you again!

Jim-LA – thank you again for the helpful links. I finished the 5-day loading dose of IVIG last week and felt ok during the treatments. However, I would like to hear if others actually felt much worse the following week? I am in pretty bad shape: nerve pain, increased balance issues, sweating, general fatique and increased weakness in legs. Much appreciate any information … Renee.

Hi Lillie – no, I only had one test. I am diagnosed with an axonal variant based on two EMG tests so they’re going to try IVIG. I have lost sensation from toes to thighs, have weakness, pain in back and in legs plus the usual array of nerve and joint pain. Muscle twitching and jumping also in upper, lower and midsection of body.

I can walk but have foot drop and am too uncoirdinated to run.

I hope to stop progression with IVIG … And maybe recover. How are you doing now?

I am to begin IVIG on Monday and hope I am not making a mistake. Spinal fluid did not confirm GBS, but pain and numbness in feet and legs plus pain in back and abdomen make it difficult to walk. The only abnormal tests were two EMG’s showing axon damage. I am worried that perhaps I should just accept my situation?

Great to hear that you’re doing so well! I am very close to getting a diagnosis (fingers crossed!). Waiting for results of a nerve biopsy. But, no matter the result I’m going to Phoenix in early august to one of the GBS/CIDP centers of excellence. How long did it take them to diagnose you ? How long from first symptoms to treatment?

Thank you … I’ve been told that gradually it may plateau but likely will progress.