We too had problems with diagnosis if you read any of my posts. I will tell you that Cleveland Clinic only took 2 half days of our time , sent dna to Mayo and came up with a completely different diagnosis rather than cidp. Even before he tested my husband he said due to him looking at the emgs (just 2) he did not feel he had cidp.
As it turned out he has a inherited gene that only comes from a parent(in this case his mother had the gene but was not yet affected by it) . His uncle died from this 20 to 25 years ago. It is called amyloidosis. There are many types of amyloidosis but the inherited type only makes up 5% . Of those 5% there are over 100 mutations. Bill has one of them. So any trials they do are usually done on Primary Amyloidosis (not the inherited type) Not to go any further, my point is please do a 2nd opinion and need be have a dna done as it will tell you what you do have. Before doing this though please ask a genetics doctor about ramifications with employers and insurance companies. We are not aware our insurance co knows it was a dna so we cannot answer for you about that but it has meant a world of good for us to know what he has. There are laws out there to protect you and Pres. Bush did sign one last May for not discrimination on dna tests but it does not become affected until sometime in May 2009. Anyone in more need of help on this subject please let me know and I will direct you to their website.