Well its been 4 years of hell for me and my family
My systemic mastocytosis has Disappeared
Cd25 cd117 cd33 clusters of spindle shape mast cells have all gone from my bone marrow official from my doctor yesterday in 2009 I was told by the best hemotolegy
I had ASM
The fact is these things got into my bone marrow during the first
Bone marrow biopsy that caused tryptase to increase for 12 months with all the symptoms osteoporosis to -3.8 gi obstruction  server pain and the bad head
Nothing like been diagnosed with a terminal disesse  only to find out 4 years later it was a mistake
But I tried to explain to the doctors that Thay were wrong
Thay just don't listen well I guess that s the end again
Peter

Hi Joan it was definitely a misdiagnosis of ASM but also misdiagnosis of SM
I carried clonal mast cells but not in the bone marrow the anaphylaxis had my tryptase up the 42 injection s made me sick
it was the first bone marrow biopsy that the few spindle shape mast cells got into the bone marrow we no this as my tryptase was at baseline before the BMB
But started increasing arfter the BMB as did the osteoporosis gi imflmation along with all the mast cell symptoms none of witch I had before through BMB
And yes all the pain and other symptoms have gone tryptase has been coming down for just over 12 mounths 25 at the last test from a height of 65
It was the infiltration of the few murture mast cells that caused the activation
But Thay died off arfter about 2 years  and the activation went with it I still have the venom ige anaphylaxis to deal with