Author Topic: Cases from The Mast Cell ("Activation") Disorders Facebook Group  (Read 2517 times)

Nas

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Hello everyone.
This is a new thread I intend for compilation of cases from The Facebook group Mast Cell ("Activation") Disorders and comparison with POIS.

So the first case that I encountered, was when I asked members after introducing my self, POIS and this forum, if anyone gets a trigger attack after orgasm, there was one case where a woman contacted me and said that she does get symptoms after orgasm. She says that she experiences a vareity of physical and neurololgiol symptoms ranging for numbness down her legs, tingling, neuropathy, mental foggyness and insomnia. It lasts for her about 5-7 days until it heals up. She was diagnosed with MCAS with elevated Tryptase levels. She also recently tested for her TSH and it was elevated. I gave her the link of this forum hopefully she'll join us soon.
I will do further investigation in the FB group to see if anyone else has and attack after orgasm.

Update #1: She says she has lyme disease, she also mentioned that suffers from POTS.

Update #2: The Second Case:
The parallelism between POTS in POIS and MCAS was also observed: I have observed many times that people in the group complain of POTS, and while I did post a poll, it wasn't a successful one though it was still in line of what I observed, perhaps a better poll in the future will be more constructive. Here's the poll: https://www.facebook.com/groups/1489732487968980/permalink/2261582150784006/
I asked weather people would say that they have POTS and the results were: 11 votes yes, and 4 votes no.
Investigation shall continue.

Update #3: The Third Case:
So after the first poll which was kind of unsuccessful, a second poll, this time addressing the issue of Orgasm directly was posted.
I asked "Do you get a trigger attack after orgasm or any sexual activity?"
Results were:
1- 21 votes voted: Sometimes
2-17 votes voted: No
3- 11 votes voted: What is sex  -Hilariously-
4- 5 votes voted: Yes
I'll try to contact those who said yes and see what exactly do the suffer from.
Here is the poll: https://www.facebook.com/groups/1489732487968980/
« Last Edit: January 12, 2019, 04:58:18 PM by Nas »

demografx

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Re: Cases from The Mast Cell ("Activation") Disorders Facebook Group
« Reply #1 on: January 04, 2019, 05:06:57 PM »
Thank you, Nas!!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Vandemolen

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Re: Cases from The Mast Cell ("Activation") Disorders Facebook Group
« Reply #2 on: January 04, 2019, 05:27:10 PM »
Hello everyone.
This is a new thread I intend for compilation of cases from The Facebook group Mast Cell ("Activation") Disorders and comparison with POIS.

So the first case that I encountered, was when I asked members after introducing my self, POIS and this forum, if anyone gets a trigger attack after orgasm, there was one case where a woman contacted me and said that she does get symptoms after orgasm. She says that she experiences a vareity of physical and neurololgiol symptoms ranging for numbness down her legs, tingling, neuropathy, mental foggyness and insomnia. It lasts for her about 5-7 days until it heals up. She was diagnosed with MCAS with elevated Tryptase levels. She also recently tested for her TSH and it was elevated. I gave her the link of this forum hopefully she'll join us soon.
I will do further investigation in the FB group to see if anyone else has and attack after orgasm.
Update #1: She says she has lyme disease
Were her symptoms caused by semen? Maybe she does not get this when the man wears a condom? There are 1 or 2 female members here with POIS (or the old forum).
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Nas

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Re: Cases from The Mast Cell ("Activation") Disorders Facebook Group
« Reply #3 on: January 04, 2019, 05:30:57 PM »
Hello everyone.
This is a new thread I intend for compilation of cases from The Facebook group Mast Cell ("Activation") Disorders and comparison with POIS.

So the first case that I encountered, was when I asked members after introducing my self, POIS and this forum, if anyone gets a trigger attack after orgasm, there was one case where a woman contacted me and said that she does get symptoms after orgasm. She says that she experiences a vareity of physical and neurololgiol symptoms ranging for numbness down her legs, tingling, neuropathy, mental foggyness and insomnia. It lasts for her about 5-7 days until it heals up. She was diagnosed with MCAS with elevated Tryptase levels. She also recently tested for her TSH and it was elevated. I gave her the link of this forum hopefully she'll join us soon.
I will do further investigation in the FB group to see if anyone else has and attack after orgasm.
Update #1: She says she has lyme disease
Were her symptoms caused by semen? Maybe she does not get this when the man wears a condom? There are 1 or 2 female members here with POIS (or the old forum).
It happens with masturbation, so it's not caused by semen, more likely her mast cells activation.

Hopeoneday

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Re: Cases from The Mast Cell ("Activation") Disorders Facebook Group
« Reply #4 on: January 04, 2019, 05:47:39 PM »
Heh frickin lyme, it is allways there when thouse symptomes apere, thouse symtomes thats she
hawe and  is probbly couseing by cronic lyme disiese, end these probbly lead to MCAS...
Read a coments of peoples here, some of them spend ower 150 tousends of dolars for treatments and
withouth suscesss . pffffffff
https://www.youtube.com/watch?v=3bId9ycVuds


« Last Edit: January 04, 2019, 05:59:45 PM by Hopeoneday »
Dr-pois.

Vandemolen

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Re: Cases from The Mast Cell ("Activation") Disorders Facebook Group
« Reply #5 on: January 04, 2019, 05:59:55 PM »
Hello everyone.
This is a new thread I intend for compilation of cases from The Facebook group Mast Cell ("Activation") Disorders and comparison with POIS.

So the first case that I encountered, was when I asked members after introducing my self, POIS and this forum, if anyone gets a trigger attack after orgasm, there was one case where a woman contacted me and said that she does get symptoms after orgasm. She says that she experiences a vareity of physical and neurololgiol symptoms ranging for numbness down her legs, tingling, neuropathy, mental foggyness and insomnia. It lasts for her about 5-7 days until it heals up. She was diagnosed with MCAS with elevated Tryptase levels. She also recently tested for her TSH and it was elevated. I gave her the link of this forum hopefully she'll join us soon.
I will do further investigation in the FB group to see if anyone else has and attack after orgasm.
Update #1: She says she has lyme disease
Were her symptoms caused by semen? Maybe she does not get this when the man wears a condom? There are 1 or 2 female members here with POIS (or the old forum).
It happens with masturbation, so it's not caused by semen, more likely her mast cells activation.
That is interesting. The only thing is that so far known there are far more male POIS-patients than female. Are male and female mast cells different? Or is a hormone thing?
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Nas

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Re: Cases from The Mast Cell ("Activation") Disorders Facebook Group
« Reply #6 on: January 04, 2019, 06:25:25 PM »
Hello everyone.
This is a new thread I intend for compilation of cases from The Facebook group Mast Cell ("Activation") Disorders and comparison with POIS.

So the first case that I encountered, was when I asked members after introducing my self, POIS and this forum, if anyone gets a trigger attack after orgasm, there was one case where a woman contacted me and said that she does get symptoms after orgasm. She says that she experiences a vareity of physical and neurololgiol symptoms ranging for numbness down her legs, tingling, neuropathy, mental foggyness and insomnia. It lasts for her about 5-7 days until it heals up. She was diagnosed with MCAS with elevated Tryptase levels. She also recently tested for her TSH and it was elevated. I gave her the link of this forum hopefully she'll join us soon.
I will do further investigation in the FB group to see if anyone else has and attack after orgasm.
Update #1: She says she has lyme disease
Were her symptoms caused by semen? Maybe she does not get this when the man wears a condom? There are 1 or 2 female members here with POIS (or the old forum).
It happens with masturbation, so it's not caused by semen, more likely her mast cells activation.
That is interesting. The only thing is that so far known there are far more male POIS-patients than female. Are male and female mast cells different? Or is a hormone thing?
Mast Cells are not different, but the hormones could be. It could also be the lyme, who knows.

Nas

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Re: Cases from The Mast Cell ("Activation") Disorders Facebook Group
« Reply #7 on: January 09, 2019, 07:48:31 PM »
The second case:
The parallelism between POTS in POIS and MCAS was also observed: I have observed many times that people in there complain of POTS and while I did post a poll it wasn't a successful one though it was still in line of what I observed, perhaps a better poll in the future will be more constructive. Here's the poll: https://www.facebook.com/groups/1489732487968980/permalink/2261582150784006/
I asked weather people would say that they have POTS and the results were: 11 votes yes, and 4 votes no.
Investigation shall continue.

Nas

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Re: Cases from The Mast Cell ("Activation") Disorders Facebook Group
« Reply #8 on: January 12, 2019, 04:56:53 PM »
The Third Case:
So after the first poll which was kind of unsuccessful, a second poll, this time addressing the issue of Orgasm directly was posted.
I asked "Do you get a trigger attack after orgasm or any sexual activity?"
Results were:
1- 21 votes voted: Sometimes
2-17 votes voted: No
3- 11 votes voted: What is sex  -Hilariously-
4- 5 votes voted: Yes
I'll try to contact those who said yes and see what exactly do the suffer from.
Here is the poll: https://www.facebook.com/groups/1489732487968980/


Muon

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Re: Cases from The Mast Cell ("Activation") Disorders Facebook Group
« Reply #9 on: January 12, 2019, 05:02:11 PM »
POIS is consistent in terms of frequency though, people who are saying sometimes doesn't sound much like POIS. However those other 5 cases might be of interest.

Nas

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Re: Cases from The Mast Cell ("Activation") Disorders Facebook Group
« Reply #10 on: January 12, 2019, 05:13:00 PM »
POIS is consistent in terms of frequency though, people who are saying sometimes doesn't sound much like POIS. However those other 5 cases might be of interest.
I mean I pretty much found the woman version of POIS right there, so I'm hopeful.

Muon

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Re: Cases from The Mast Cell ("Activation") Disorders Facebook Group
« Reply #11 on: January 12, 2019, 05:21:03 PM »
It spreads some awareness about POIS among these patients though, so that's positive.