Wishing it was cidp

October 9, 2008 at 11:52 pm

For those who know our story, my husband and I got our second opinion at Cleveland Clinic. Dr. Levin told us up front before even any tests that he did not thing Bill had cidp. Asking how he arrived at that he said the emgs do not convince him.
Well he sent a sample of blood to have genetic testing(DNA) and he has an inherited amyloidosis (Familial) It affects the organs and no treatment except a liver transplant to change the cells in his liver. I am very upset with of course our nero here. There was no protien in the spinal tap and no onion bulb in the bioposy. I told him if no onion bulb then how can you say cidp. He said not all people show onion bulb. Also he does not do genetic testing as medicare does not pay for it. He kept looking at me not Bill as he knows I do not trust him, I believe he can see it with my demeaner. I cannot understand how he can keep treating him when there was little proof. We are gathering our records again and will decide to go to either Mayo or Boston u, for more testing. They will do a skin testing in the stomach to confirm. We are hoping our children will not have the gene and that will be checked out also.

Do not know where for transplant either. A consultation will be done first explaining all. Please be aware his symptoms were just like cidp except Clev Clinic-Dr. Leven said it would have been up his arms by now although it is starting. We waisted 10 months with this doctor and me always fighting him on things. My husband is very calm and does not seem upset with him . He says it is not worth getting yourself upset as we cannot do anything about it.

They are trying hard to get doctors more aware of this rare disease. Cost for dna to us is not as important as my husbands health and a correct dx. I am just shattered.