Reply To: questions from recently diagnosed CIDP

February 21, 2013 at 11:37 pm

jane—you shouldn’t  have to have a nerve biopsy just for your insurance company to cover your treatment, but if your Dr suggests it’s a good idea or for some reason you do need one, just wanted to let you know I did have it done at the Mayo in MN.  They used my sural nerve as my feet are the weakest.  It really was not that bad, I had it done under local anesthesia, was able to walk on it immediately after.  There was some nerve pain in the area after for a while, but not bad.

I know everyone’s experience with it is different. I opted to go through with it because I was already in MN, figured  Mayo would be one of the best places to do it.  I actually had less problems with the nerve biopsy than i had with the lumbar puncture.

I do have an atypical case where it was suggested to help with diagnosis.

sorry i can’t help you much with your questions on relapse,recovery etc. Im a little over three years in with this diagnosis. Have tried prednisone, ivig, plasma x/c, rituxin and now am currently back on ivig.   The ivig seems to slow down the progression, but nothing has helped me gain back strength or sensory loss  so far.   it is discouraging and can take time to find treatment that works.

I just recently started with a new neurologist I found online listed as a cidp center of excellence (st elizabeths in Boston).  I also got accepted to Chicago for the 3 day consult to see if i am a candidate for a stem cell transplant.   Wish i had applied for this sooner, i kept hoping the other treatments were going to work……oh well hindsight.

It is a hard disease to deal with and normal to wish for your old life back—-I go through this a lot too.  Seems like most of us that have this were avid exercisers and led very active busy lives prior.    Best of luck in getting the ivig approved by your ins co.  im still in the appeal process for the one set of  rituxin infusions i received back in June for $17,000 that they did not deny until after i received the infusion.   insurance companies are just so joyous to deal with!!!