Reply To: Cedars~Sinai Dr. Lewis

May 7, 2018 at 1:29 pm

My problem with UC Irvine doing the Autonomic Testing is that they don’t have the equipment to do the testing. They said they would have it in January, but that didn’t happen. Then They said they would have it in April, and now they are saying July. If they couldn’t do the testing in a timely manner, why didn’t,t they send me someplace where it could be done? And when I asked what they could do for me if it was proven, they said they couldn’t do anything, which I don’t think is true. There is a drug called Northera that seems to be the answer to my problem. It is expensive, but not more than staying in a nursing home.

That is why I am hoping to get an opinion at Cedars-Sinai, which is not only a Center of Excellence, Dr. Lewis is probably the world’s leading expert in CIDP. With having two differing opinions, having a third seems to be my only option.

I have to stay local, because I can’t travel, as I have no family to help. Cedars is only about 25 Miles from where I’m at. Transportation would cost about $125, but that is half of what it costs for me to stay in the nursing home for one day.

Just what a little ray of hope that I can go back to my home, cat and big screen TV.