Note from Joanf bad news

October 10, 2008 at 5:00 pm

After wasting 10 months on Dr. Thomas we find at Cleveland Clinic that Bill has Amyloidosis Familial (inherited) his uncle died from. Every doc we saw knew this was on his family history.

We have been told that it had to have come from his mother as it is handed down from parent. She had the gene but it never showed up as she died of leukemia.(so they say) I am very gun shy now re doctors. I only wanted the best for my husband so I let him make the decisions although I pushed hard for him to go for a second opinion. I pushed hard on physical therapy, not smoking, see a heart doctor(it has been 3 years and he has a stint) He was depressed and just did not want to do anything most of the time. The first thing Doc Thomas said is “It Happens” . Nice huh? I asked him why he did not test for it.
He said he did on the foot bioposy but not a genetic test (dna) because Medicare does not pay for them. I guess $ is more important that Bill’s life. Anyway I also questioned him on no onion bulb in foot biopsy as I know if no onion bulb then no cidp. He said that is not true. Some does not show onion bulb. But Dr. Levin said emgs did not prove it and I know his spinal tap did not show it. He did sqirm a little. Also there is no demyelinating. I was angry and he could tell by the look on myface. He never looked at Bill much. Bill did not seem to be upset. Said he did not want to **** him off. Why I said? He said it did not do any good to get upset. I really cannot understand that.

All I am saying now is that I have been told that they are trying to get doctors to check for amyloidosis because alot of people die before they can get treatment(only a liver transplant may do it) Thomas said there is not treatment and they do not usually do liver transplants for Amyloidosis. He just keeps being a jerk. Boston told me differently.
With that I am closing. I need to think ,yell, scream, and cry. But wanted to thank all of you for supporting me and helping me. Sorry I could not give some good news.