Janilee,
I don't know if your still here but I have malignant systemic mastocytosis. There is no blood test to find out if you have masto. They do a skin punch biopsy or a bone marrow biopsy. I have been thru all the biopsies and was even on chemo (Gleevec) until it damaged my liver. Life is hell with masto so I pray you don't have it. Let me know if you have any specific questions.
Wendy
QUOTE=Janilee;2559997]Hi, I hope it's ok to enter a question here. I'm a newbee. I have almost all of the symptoms of mastocytosis but blood tests were negitive. Doc said it was the best blood test available. Doc want's me to get skin biop next time I have bruises. A rhuem. tested me for several autoimmune diseases, which were all neg. except ANA was 1:20, he thinks I have mastocytosis. I had never heard of this before. He sent me to a immunologist. Immunologist was the one who ran the masto test.
Can someone have masto and still have negitive blood tests?
Thank you for any help you may have. This is so frustating. My symptoms are getting worse over the years and all the Doctors tell me is that my symptoms are iidiopathic, hives, anaphalaxix, bruises, blisters, etc.
Thank you again :wave:
I don't know if your still here but I have malignant systemic mastocytosis. There is no blood test to find out if you have masto. They do a skin punch biopsy or a bone marrow biopsy. I have been thru all the biopsies and was even on chemo (Gleevec) until it damaged my liver. Life is hell with masto so I pray you don't have it. Let me know if you have any specific questions.
Wendy
QUOTE=Janilee;2559997]Hi, I hope it's ok to enter a question here. I'm a newbee. I have almost all of the symptoms of mastocytosis but blood tests were negitive. Doc said it was the best blood test available. Doc want's me to get skin biop next time I have bruises. A rhuem. tested me for several autoimmune diseases, which were all neg. except ANA was 1:20, he thinks I have mastocytosis. I had never heard of this before. He sent me to a immunologist. Immunologist was the one who ran the masto test.
Can someone have masto and still have negitive blood tests?
Thank you for any help you may have. This is so frustating. My symptoms are getting worse over the years and all the Doctors tell me is that my symptoms are iidiopathic, hives, anaphalaxix, bruises, blisters, etc.
Thank you again :wave: