Diagnosed with CIDP and not treated as of yet

July 18, 2008 at 11:22 am

We just got back from the Mayo Clinic and my daughter is kind of going through the same thing as you. But, she has been on IVIG for 2 years and she gets 22 grams every week. She has also been on Cellcept 2000 mg per day for one year. The confusing part of our visit to Mayo was that her left side had a very small improvement, but her right side arm stayed the same, but the lower leg had a change for the worse. When the peripheral nerve specialist, Dr. James Dyck, whose father named CIDP, examined her he says she looks just like someone with CMT, but then once she went on IVIG she stablized. Also, since she has been on treatment, her protein levels went down. She is one of the more difficult ones to diagnose. So, now they want to do a nerve biopsy to see if there is, in fact, inflammation. They say that they can determine if it is CMT or CIDP by looking at the nerve. But, they say that the biospy of the nerve should only be done at the Mayo Clinic, because they and one other place are the only ones that are experts in conducting the biopsy. Our doctor at home was in total agreement. He said he will not do the biopsy if it can’t be done at Mayo. After two years of treatment, we really need to know if it is CIDP or not, because of costs and because of risks. She had all the tests for CMT two years ago and they came back negative, but there are so many types that cannot be tested for. Her symptoms are also staying mainly in her hands and lower legs. We are now waiting on a neurologist to review her records and tell us if he will do the surgery. What we are trying to do is have the surgery done at home and then have the nerve shipped to Mayo for the biospy. These diseases are so confusing and we would just like to know what we are dealing with. If she does have CMT, I want her off the medications ASAP. We only have a $2 million dollar cap on our insurance and that can be used up real fast. Our insurance has paid very well for her IVIG and Cellcept. The cost per month for both is around $19,500.