Finally a diagnosis

Thankyou Clem. I think the worst part of all of this testing is the wondering just what it is, what causes it, what treatment will I have. I enjoy this forum very much and thought I may not qualify to even be here to compare notes. It is Polycthemia so hopefully I can still be part of this wonderful group.

It's something we need but at same time, we wish we didn't .

Thankyou for the support that this forum has given to me! I am happy as well. My primary Doctor gave me a copy of the report from the Hemotologist. It was interesting to read, however a lot was sure over my head. I forgot to ask a question. Does anyone know what causes my face and especially my hands to get sooooo red. The colour changes during the day. Sometimes not so red then later on to be so red. I have read that is a trademark of Polythycemia which my blood disorder is but secondary. What would cause this. At times it's very embarrassing when a total stranger will say , your hands are  so red. I get this comment a lot. Especially if I am paying for a purchase using my debit card. Does anyone know on this forum?

My opinion would be Red blood cells are being produced in excess. That would explain the red colour. If your doctor did a cbc blood test this would show up. Still dont take my words at face value and ask your doctor to be sure.

Thank you for your response. I do know my red blood cells are high. I see the oncologist next Tuesday who will have the cbc done one hr before I see him. Due to my JAK being a negative and the confirmation that my bone marrow was not what was causing the overproduction of red blood cells it was diagnosed as a secondary Polycytemia. The plumanary test revealed this. I also had a recent cat scan in emergency because I was having difficulty breathing and passing out. That test revealed small clots in my lung. I was then placed on blood thinners. The Hemotologist refered me back to my family Doctor. Next week will give an indication of how high my red blood cells are.