Dec 24, 2009 - 5:31 pm
My aunt was recently hostpitalized because of extremely low blood count, and for a while a number of doctors were unable to find out what was wrong. After four weeks of testa and what not, she was diagnosed with myelofibrosis. Her doctor wanted to start her on thalidomide. We went to see four other doctors because the first one said that she was not 1000% sure either. Ultimately we found another doctor that we liked and came to trust, he said this was not a typical case of myelofibrosis, that it was autoimmune myelofibrosis and so thalidomide was not the preferred treatment, but cortisone is. Now we have no idea which doctor to listen to and since it's a very rare disease, we're pretty much on our own.
Plus, from what I read and hear I understand that myelofibrosis has no cure and the best you can do is receive some treatment to relieve the symptoms and the pain.
So I'd love to hear about any experiences and insights.
Any comment will be much appreciated.