Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Bone marrow Biopsy http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1380954495 Message started by peter on 10/04/13 at 19:28:15

Title: Bone marrow Biopsy
Post by peter on 10/04/13 at 19:28:15

Most people with SM or MCA have 3 or Moore bone marrow biopsy
Is it the same for all bone marrow disesse
Or just the mast cell disesse

I had chronic increasing tryptase arfter my first BMB was that caused by the mast cells getting in to the bone marrow

Title: Re: Bone marrow Biopsy
Post by Starflower on 10/05/13 at 16:40:20

I had a bone marrow biopsy to rule out Castleman's disease as the underlying cause of my symptoms. They're valuable for diagnosing many disorders that affect the "hematopoetic" system (bone marrow, blood, lymph nodes)... multiple myeloma, leukemia, certain types of anemia, etc...

If you're lucky enough to survive many years with multiple myeloma, it's possible to end up having dozens of bone marrow biopsies... I've met some people like that!

Heather

Title: Re: Bone marrow Biopsy
Post by peter on 10/05/13 at 21:49:00

Hl Heather thanks for the reply if pergrestion of SM is by
C.Findings and tryptase what's the need for so many bmb s
I have had 3 myself as the third one should that all criteria for SM has disappeared

The only way to prove it was not a mistake is to have another one but I don't think so
I have stopped the pills and doing well

Have you heard of bone marrow mastocytosis disappearance in anyone else
Peter

Title: Re: Bone marrow Biopsy
Post by Starflower on 10/07/13 at 09:40:53

Glad to hear that you're doing so well, Peter! I've heard of people having a drop in baseline tryptase, but I'm sure your bone marrow would still show some abnormalities. Symptoms are not directly connected to your mast cell "burden" (amount of mast cells)... which is why one person with MCAD might be disabled by their symptoms, yet a different person with SM is able to go without medication. This is one thing that drives doctors nuts about us! They have to trust us to report our symptoms and learn how to adjust our own medications. They can't just rely on lab tests :D

Heather

Title: Re: Bone marrow Biopsy
Post by peter on 10/07/13 at 12:12:06

My lab test were very clear cut murture mast cell infiltration of the bone marrow
Coursing chronic increasing tryptase until treatment with zometa
Witch stopped the tryptase from increasing it took 2years for the tryptase to came back to baseline
The zometa control the mast cells until Thay died off by themselves along with the symptoms this is not systemic mastocytosis but a different mast cell disesse

We should not be put under SM by the WHO as Thay are fully aware of this