I will try probably most effective treatment of pois in next 2 days

[Reve]

I live in iran and finally I convinced a hemo for imatinib prescription for mcas I have a bone marrow biopsy 2 days later then I start it I Will update this post soon

[Muon]

Bone marrow is almost always clean in MCAS. Biopsy of upper and/or lower part of GI tract with CD117 staining is preferable: https://poiscenter.com/forums/index.php?topic=3236.msg37037#msg37037

[Reve]

Bone marrow is almost always clean in MCAS. Biopsy of upper and/or lower part of GI tract with CD117 staining is preferable: https://poiscenter.com/forums/index.php?topic=3236.msg37037#msg37037

my GI CD117 staining is positive I don't know why exactly she prescribed bone marrow biopsy but I have gleevec prescription now but she said you must wait until Tuesday then start it she explained risks and other stuff but I can't handle this anymore I have massive brain fog and anxiety

[Muon]

my GI CD117 staining is positive…

There you go…
What part(s) of the GI did they examine? You could look for additional expression of both CD2 and CD25 on those mast cells. Diagnosis could be made if you combine it with a major criteria and response to MC therapy after trial and error.

[Reve]

my GI CD117 staining is positive…

There you go…
What part(s) of the GI did they examine? You could look for additional expression of both CD2 and CD25 on those mast cells. Diagnosis could be made if you combine it with a major criteria and response to MC therapy after trial and error.

terminal ileum,we don't have mast cells mediators test in iran and most part of diagnosis is base on eds and pots

[hosien2008]

Salam khobi? manam mesl to in sandromo daram shomarato bede behet zang bezanam

[Reve]

Salam khobi? manam mesl to in sandromo daram shomarato bede behet zang bezanam

bebin ta ehlers danlus va pots nadashte bashi behet nemidan aslan hichkas esm in sandrom mcas ro nashnideh che berese be pois imatinib daroye shimi darmanie kheili khatarnake man alan taghriban falaj shodam ke hazer shodan hamchin darooye ghavi behem bedan bad doctor goft nahayatan bad 15 20 sal kalaket ro mi kane ketotifen ba famotidine ro test kardi?!man dige joon nadaram hatta ro paham vaisam 8 ta govahi va azmayesh barashoon bordam to ehler danlus nadari?!bedune eds aslan karet pish nemire

[hosien2008]

Man fekr mikonam ibs rode daram,ye modati hast daram anti butic mikhoram ba terazosin kame behtaram,aslan meyl jensi nadaram dege,antibutic khyli az alaem mano behtar kard alan age ba shekam por sex konam hich alamati nadaram man fekr mikonam  ibs daram.

[Reve]

Bone marrow is almost always clean in MCAS. Biopsy of upper and/or lower part of GI tract with CD117 staining is preferable: https://poiscenter.com/forums/index.php?topic=3236.msg37037#msg37037

dear muon positive cd117 staining is enough for mcas diagnosion? with eds and pots

[Muon]

Bone marrow is almost always clean in MCAS. Biopsy of upper and/or lower part of GI tract with CD117 staining is preferable: https://poiscenter.com/forums/index.php?topic=3236.msg37037#msg37037

dear muon positive cd117 staining is enough for mcas diagnosion? with eds and pots

No.

See table 2: https://www.tandfonline.com/doi/figure/10.3109/07853890.2016.1161231?scroll=top&needAccess=true#
"The diagnosis mast cell activation syndrome is made upon fulfilment of either both major criteria or the second criterion plus at least one minor criterion (modified from (52))."

Major criteria 1 has been fulfilled. The only thing left is to meet Major criteria 2. Once that has been met you may be stamped with the MCAS diagnosis.

How did they diagnose EDS and POTS. These syndromes are seen together with MCAS btw.

[Muon]

We may ask ourself the question whether the infiltrates in the GI tract correlate with infiltrates of MCs in the urogenital tract. Perhaps in POISers this could be indeed the case. Imatinib is oral chemotherapy that is able to kill MCs. If POIS stems from MCs in the urogenital tract then it may actually be a contender for treating POIS. Also, does the elevated MCs numbers and/or dysfunctional GI mast cell cause absorption issues? This could affect neurotransmitter levels. MCs communicate with the Vagus nerve, the latter may affect brain chemistry like dopamine levels. Dopamine plays a major role in orgasm. So if the MCs are dysfunctional in both the GI and UG tract you may end up with semen/MC contact reaction plus a dysfunctional orgasmic response. I'm thinking out loud here btw.

Keep us updated on your Imatinib trial.

[Hopeoneday]

Intresting, CD117 is specific marker for GIST among tumor
that occur in gi tract..

[Reve]

bone marrow biopsy was extremely painful I will start imatinib tonight

[Reve]

only 1 pill and almost 70 percent less pois effect

[Reve]

pill 2 and up to 90 percent pois free ejaculation

[Hopeoneday]

This is intresting, keep posting like in what hapen in 10days or longer
period of time...

[Reve]

extremely severe tiredness and Nausea and vomiting with imatinib my mood changes every 1 hour I can't tolerate this shit too strong of a drug. I hope this side effects get better
(moderator edit)

[Quantum]

extremely severe tiredness and Nausea and vomiting with imatinib my mood changes every 1 hour I can't tolerate this   shit   too strong of a drug. I hope this side effects get better

Gleevec is a very invasive drug that has many side effects.  It is hard on the body, not everybody can tolerate it.  That is why it is usually only prescribed by specialists and needs very close monitoring.
Keep us updated on your treatment results.

[Reve]

my bone marrow biopsy came back positive I can't figure out what exactly happened to me but I had hallucinations after orgasms and most severe case of pois in the poiscenter I think it's not out of mind I have mastocytosis does anybody here could figure out mast cells staining??? cause it doesn't have number only percentage

[Quantum]

my bone marrow biopsy came back positive I can't figure out what exactly happened to me but I had hallucinations after orgasms and most severe case of pois in the poiscenter I think it's not out of mind I have mastocytosis does anybody here could figure out mast cells staining??? cause it doesn't have number only percentage

Hi Reve,

It looks like mastocytosis is a group of different diseases, and that there are complicated criteria to try and discern between those different types.   It seems that there are "B Findings"and 'C Findings", for example.   I looked at this article : https://tmsforacure.org/overview/systemic-mastocytosis-variants-including-b-c-findings/ .   It shows that the % of mast cells infiltrate present in the bone marrow is a criterion used to identify mastocytosis, and which type it is.
You can see in this article that having more than 30% mast cells bone marrow infiltrates is a "B Finding".

In another article, where mastocytosis cases are presented, bone marrow biopsies showed a mast cell infiltration with a range between 15% and 70%, see at https://www.ajronline.org/doi/10.2214/ajr.179.5.1791235 , in the "Material and Method" section.

This may help you interpret the percentage you see.  I am no expert, but if these percentages you see are about the level of bone marrow infiltration by mast cells, it looks like a % higher than 15 % is positive, and from there, depending on the percentage, it is used to determine what type of mastocytosis you may have.   

Do you see percentages between 15% and 70% ?

At any rates, your specialist will tell you what your results really mean.



How does it go with Gleevec?  Did you stop it ?  Or, if you still take it, do you still have a positive effect on your POIS ?