Mast Cell Disorders Forum | |
http://mastcelldisorders.wallack.us/yabb/YaBB.pl
Welcome! >> Introduce Yourself/Share Your Story >> miss diagnosed systemic mastocytosis http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1383803526 Message started by peter on 11/06/13 at 17:52:06 |
Title: miss diagnosed systemic mastocytosis Post by peter on 11/06/13 at 17:52:06 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 |
Title: Re: miss diagnosed systemic mastocytosis Post by Joan on 11/17/13 at 16:25:35 Hi Peter, So do you believe it's gone or was misdiagnosed at the beginning? Is it possible that they simply biopsied a spot that was clear this time? We all have places in our bones that don't have mast cells in them. I can't imagine that you would have had ASM to begin with. Most people with that have a pretty short prognosis unless they use Midostaurin or find some chemotherapy that works. Are you still having symptoms and taking meds for SM? I hope it is really gone! There is one case study of a spontaneous remission. Joan |
Title: Re: miss diagnosed systemic mastocytosis Post by peter on 11/17/13 at 17:49:45 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 |
Mast Cell Disorders Forum » Powered by YaBB 2.3.1! YaBB © 2000-2009. All Rights Reserved. |