Dear Patrica, first of all do you have primary or idopthic Myelofibrosis? Or, like me did you suffer from a previous blood disorder? Myelofibrosis can arise on it's own or be the next step in a blood disorder. Either way, I am afraid it is deadly. Only 2 people in 100,00 get so there is not much research going on. Lucky us.
Scar tissue develops in bone marrow causing the marrow to produce less and less blood cells.
The symptims are many. The main one is tiredness. Others can be diarrhea, night sweats, painful abdomen, fluid retention, vision disturbances ie;spots and blurring. Others are joint pain and bone pain from the marrow expanding into the long bones.
60% of patients with idopathic myelofibrosis have 5 to 7 years but many patients live 10 years or more. I have heard of some who live decades. It all depends on how fast it goes. I know that this is not a pretty picture but it may not be as bad as it seems.
I do not know your age or how long you have had this. There is one cure which is complete bone marrow transplant. This in it's self is very risky. You must be in good health other then the bone marrow disease and have a match.
You should be talking to your Dr. and if he/she will not be open with you, get another one. There is no need for a second opinion.
I learnd most of this on the internet. All you have to do is a google on Myelofibrosis and you will find more than you want to know.
I hope I have helped you. As of now I cannot believe that I have this but for the constant pain in my abdomen. Some days I am really down and cry a lot. I try not to let my children see me but they all know.
I have three wonderful boys who are my life. They give me the strength to go on. I also pray. As of now I am holding my own and that is all I can hope for.
Patrica, I hope that you are not alone in this. I want you to know that you may post me any time you want, to talk and hopefully laugh a bit. I wish you the very best and advise you to speak of you fears with your Dr. Good luck my friend. I hope to hear from you again. Melanie