Author Topic: reve's case  (Read 933 times)

Reve

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reve's case
« on: October 16, 2021, 08:21:30 AM »
Hi guys I don't know exactly how long could i write or read any more. last week I barely graduated university with help of my friends(coronavirus, online exam ,...)last night i saw a neurologist and i showed him my brain mri he dignosis me Multiple System Atrophy but I am only 23 and i lost 20 percent of my brain I don't know exactly how long I be alive but I decided do a wish list before attempt suicide one of them is writing my case in poiscenter maybe it will help some one in the future!

Reve

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Re: reve's case
« Reply #1 on: October 16, 2021, 08:56:03 AM »
my English is weak then sorry if i can't use proper grammar or words and I can't think clearly
1-first I start my journey with childhood meningitis when I was 2 year's old
2-when I reached 6 or 7(I can't remember exactly)I had air hunger and some kind of asthma but I live in iran and doctors says everything is beacuse of stress if they don't have proper explanation
3-i was sick more often than other childrens
4-my father family have extremely strong immune system maybe you can't believe me but they never get sick
5- I had joint hypermobility from childhood but they told my mother it's a simple joint hypermobility and you shouldn't be afraid but later (2 weeks ago I dignosis with H-EDS)
6-when I was 11 some kind of skin lesions appear on my hand and my mother show it to best skin doctor of iran and he said i didn't saw like that before just I suggest you don't Wash your hands with soap I think that was mast cells
7-I have ADHD and I had high IQ before this happens (143 IQ point)
8-I don't exactly when I developed POIS cause I thought it was punishment of god but I think it was 14

Reve

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Re: reve's case
« Reply #2 on: October 16, 2021, 09:24:32 AM »
9-I developed MCAS when I was 15 some kind of extremely severe anxiety with nerve burn occurred for me after ejaculation  and it never left me damn doctor Prescribed Zoloft and i felt massive OCD kind  brain fog with it then he prescribed atomoxetine for brain fog and I moved on 6 years with it then I started some kind of delusional feeling with Zoloft they stopped Zoloft and they told me i have bipolar disorder cause i they told me only bipolars became delusional with Zoloft (but recently I find out people with MCAS become delusional too)
10-they tried more than 40 kind of med without any success
11- 2 month ago I find out All these years I suffered from MCAS and I believe POIS is the worse kind of MAST CELL ACTIVATION DISEASE
12-now I am dealing with msa at 23

demografx

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Re: reve's case
« Reply #3 on: October 16, 2021, 10:02:59 AM »

I believe POIS is the worse kind of MAST CELL ACTIVATION DISEASE


Since it’s not yet been proven, what convinces you that your POIS is MCAD?

Thanks.
« Last Edit: October 17, 2021, 07:09:57 PM by demografx »
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

demografx

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Re: reve's case
« Reply #4 on: October 16, 2021, 10:07:59 AM »

Last week I…graduated university…


« Last Edit: October 16, 2021, 10:11:21 AM by demografx »
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

demografx

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Re: reve's case
« Reply #5 on: October 16, 2021, 10:15:44 AM »

I decided do a wish list before attempt suicide…


Unfortunately, some of us have needed this message from time to time. This is being posted because none of the admins/mods here are really trained to respond to this level of POIS despondency.





••    USA: 800.273.8255 click here...
...or contact the Crisis Text Line by
texting Hello to 741741

Or visit their website:
https://www.crisistextline.org/



••.   List Of International Suicide Hotlines:


telephone with website/email contact info
http://www.suicide.org/international-suicide-hotlines.html

Quote from: LookingForACure on Today (10/10/2020) at 06:46:28 PM
• I found this Venezuelan suicide hotline: 0241-8433308
« Last Edit: October 17, 2021, 07:29:52 AM by demografx »
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

demografx

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Re: reve's case
« Reply #6 on: October 16, 2021, 12:03:04 PM »
I just texted the Suicide Prevention Hotline (by texting Hello to 741741) to test their system. They also offered me this description to post @ POISCenter:

"We are a support line for all ages, providing free, 24/7 crisis support through SMS text messaging. Learn more at:

https://bit.ly/CTLfaq_ref
« Last Edit: October 17, 2021, 07:25:23 AM by demografx »
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

Reve

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Re: reve's case
« Reply #7 on: October 17, 2021, 04:15:28 PM »

I believe POIS is the worse kind of MAST CELL ACTIVATION DISEASE


Since it’s not been proven, what convinces you that your POIS is MCAD?

Thanks.


today I talked with a new neurologist he think it's not msa and my brain mri is normal I convinced him for next step of MCAS treatment  (I mean imatinib) then I still have some hope I
can't prove it yet but if I right my POIS must improve with it

« Last Edit: October 17, 2021, 07:09:21 PM by demografx »

demografx

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Re: reve's case
« Reply #8 on: October 17, 2021, 06:53:56 PM »

I believe POIS is the worse kind of MAST CELL ACTIVATION DISEASE


Since it’s not yet been proven, what convinces you that your POIS is MCAD?

Thanks.


today I talked with a new neurologist he think it's not msa and my brain mri is normal I convinced him for next step of MCAS treatment  (I mean imatinib) then I still have some hope I
can't prove it yet but if I right my POIS must improve with it

Reve, thank you, but I still wonder what convinces you, Reve: why you think you might be right about MCAS/MCAD’s correlation with POIS? Right now?

(I’m not asking you to prove it. I’m just curious how you, yourself,  came to that conclusion?)

Many thanks, Reve!
Best,
Demo
« Last Edit: October 17, 2021, 07:13:50 PM by demografx »
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

Reve

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Re: reve's case
« Reply #9 on: October 17, 2021, 07:28:18 PM »
because I became delusional and massive brain fog happened to me After ejaculation and  recently I experience exactly these symptoms when I have a flare from food or exercise without any ejaculation I am sure our Mast cells have a big problem but we never can cure it without killing them with chemo meds like gleevec or tki's  maybe desensitization be effective but at best point 60 percent and it's not enough I prefer live only 5 years without any illness my doctor warned me about risk of cancer with imatinib but I don't want to live any more like this,if i develope cancer I kill myself before it hurts me but I have still hope

demografx

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Re: reve's case
« Reply #10 on: October 17, 2021, 07:51:52 PM »

…I don't want to live any more like this…


That’s exactly why forum member Animus decided to take a chance with castration! (Thankfully, it was successful for him!)
« Last Edit: October 17, 2021, 07:55:31 PM by demografx »
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

Reve

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Re: reve's case
« Reply #11 on: October 18, 2021, 03:01:43 AM »
i know Animus, maybe his problem was only pois, but orgasm is one of my hundreds trigger's and iam sure even I do castration only small amounts of my problems can be solve with so many consequences without any significant result,then I give a chance to gleevec but first I must approve It from a medical team