PSSD could be small fiber polyneuropathy

This is for hypothesis and even educated speculation.
KJP21
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Re: PSSD could be small fiber polyneuropathy

Unread post by KJP21 »

Integra wrote: Wed Jan 12, 2022 7:04 pm Let's be realistic. The topic is interesting, but we will not recruit people with a biopsy.
You are so negative. You say you are just skeptical, but in reality, you clearly come off as negative and potentially even depressed.

I had someone privately message me and listed loss of smell as his symptoms. *hand to face*
Integra
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Re: PSSD could be small fiber polyneuropathy

Unread post by Integra »

KJP21 wrote: Wed Jan 12, 2022 7:24 pm
Integra wrote: Wed Jan 12, 2022 7:04 pm Let's be realistic. The topic is interesting, but we will not recruit people with a biopsy.
You are so negative. You say you are just skeptical, but in reality, you clearly come off as negative and potentially even depressed.

I had someone privately message me and listed loss of smell as his symptoms. *hand to face*
How many people have written to you that they did a biopsy or will do it? I tried to agitate people for simpler actions, and you want them to do a biopsy.
Impermanence
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Re: PSSD could be small fiber polyneuropathy

Unread post by Impermanence »

Hi guys.
Biopsie from where? Penis?
Symptoms of small fibers are mostly pain, like burning, paresthesia and sometimes hypoesthesia en feeling temperature and pain.
And moreover I'm not really convinced by this theory I don't have the feeling we have small fiber neuropathy in the feet so probably the biopsy would be useless there.
An other tool, less invasive and less expansive could be the Sudoscan, it's an exam we use in neurology to know if there is small fiber lesion. It's not the reference like biopsy but it could be useful.
Something sure, at least for me, the sensitive impairment in the penis are not (only) related to small fiber. I'm still open to the debate if the sensitivity impairment is something central (brain +/- spinal chord) or peripheral like pudendal or penile dorsale nerve or neuropathy. I'm actually doing electromyogram for my patients, I'm not use to do pelvic one but maybe I could try on me if the penile dorsale nerve is normal or not.
bigpoppa10040
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Re: PSSD could be small fiber polyneuropathy

Unread post by bigpoppa10040 »

cdraham wrote: Wed Jan 12, 2022 7:16 pm
bigpoppa10040 wrote: Wed Jan 12, 2022 11:41 am I think it’s crucial to somehow find out if there is still an active autoimmune process. We could stop the damage and give all of us the best chance of recovery if true. Many things suggest that there may still be an ongoing reaction. I just don’t know the next steps to take.
Thats pretty easy to figure out. Potent tnf-a inhibitors or corticosteroids should give us a window.

I think you could also measure certain cytokines but noone did that in these communities because everyone was focused on "epigenetic changes" and 5AR / receptor theory which is total BS imo.

Totally agree. Honestly I talked to someone who has been on that forum for a decade and he believes they are pushing that theory for research purposes. No researcher is interested in autoimmune diseases but it’s much easier to get the scientific and research community on board when talking about the big buzzwords genetics and epigenetics. It’s painfully obvious this is what happening and any talk about any other cause is immediately thrown away. They even changed their rules the other day basically saying you have to agree with them to move research forward. Bullshit.

Over the history of all forums, people have gotten windows when sick, lack of sleep, and on certain doses of immunosuppressants / corticosteroids.

People can also feel worse which leads me to believe there is something active still happening. Unless it’s like a guillane barre syndrome where the autoimmune attack stops and you’re left with damage but a lot of these people make full recoveries
cdraham
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Re: PSSD could be small fiber polyneuropathy

Unread post by cdraham »

bigpoppa10040 wrote: Thu Jan 13, 2022 8:15 am
cdraham wrote: Wed Jan 12, 2022 7:16 pm
bigpoppa10040 wrote: Wed Jan 12, 2022 11:41 am I think it’s crucial to somehow find out if there is still an active autoimmune process. We could stop the damage and give all of us the best chance of recovery if true. Many things suggest that there may still be an ongoing reaction. I just don’t know the next steps to take.
Thats pretty easy to figure out. Potent tnf-a inhibitors or corticosteroids should give us a window.

I think you could also measure certain cytokines but noone did that in these communities because everyone was focused on "epigenetic changes" and 5AR / receptor theory which is total BS imo.

Totally agree. Honestly I talked to someone who has been on that forum for a decade and he believes they are pushing that theory for research purposes. No researcher is interested in autoimmune diseases but it’s much easier to get the scientific and research community on board when talking about the big buzzwords genetics and epigenetics. It’s painfully obvious this is what happening and any talk about any other cause is immediately thrown away. They even changed their rules the other day basically saying you have to agree with them to move research forward. Bullshit.

Over the history of all forums, people have gotten windows when sick, lack of sleep, and on certain doses of immunosuppressants / corticosteroids.

People can also feel worse which leads me to believe there is something active still happening. Unless it’s like a guillane barre syndrome where the autoimmune attack stops and you’re left with damage but a lot of these people make full recoveries
Honestly propeciahelp mods did more damage to the community than they helped. When people believe this stupid AR and epigenetic change theory, which is totally absurd, people tend to get stuck in a thought loop that there is no way out. Thats how suicides happen.

Just look at poor anhedonicape and other guys that thought they have some irreversible epigentic changes happened to them. they even went as far as trying out "demethylation treatments" like cancer drugs.
Kostakonkordia
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Re: PSSD could be small fiber polyneuropathy

Unread post by Kostakonkordia »

Are there any moderators active on this site???
It seems like they haven't been active in a long time but I need a permission for my introduction.
Greetings
Kosta
Kostakonkordia
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Re: PSSD could be small fiber polyneuropathy

Unread post by Kostakonkordia »

PSSD is most likely a a result from dysbiosis which can trigger leaky gut which is linked with autoimmune response and pssd.
Read the full etiology from lastround360 he has successfully treated pssd and so have a bunch of members on reddit.
Above are his two article, please read them.
His first article:

https://www.reddit.com/r/PSSD/comments/ ... urce=share



His second article:

https://www.reddit.com/r/PSSD/comments/ ... urce=share

Greetings
Kosta
Brain food
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Re: PSSD could be small fiber polyneuropathy

Unread post by Brain food »

A study recently came out saying that it is extremely likely that the Epstein-Barr-Virus causes Multiple sclerosis (MS) based on correlation data. MS is one of the only other examples I could find of a condition that causes genital numbness and anorgasmia. Maybe if this new finding leads to more research into the mechanisms behind MS, it will also help the PSSD community. It’s really too early to tell, but I wanted to share the articles below:

https://m.dw.com/en/multiple-sclerosis- ... a-60413064

https://my.clevelandclinic.org/departme ... unction-ms
BruteForce
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Re: PSSD could be small fiber polyneuropathy

Unread post by BruteForce »

cdraham wrote: Wed Jan 12, 2022 7:16 pm
Honestly propeciahelp mods did more damage to the community than they helped. When people believe this stupid AR and epigenetic change theory, which is totally absurd, people tend to get stuck in a thought loop that there is no way out. Thats how suicides happen.

Just look at poor anhedonicape and other guys that thought they have some irreversible epigentic changes happened to them. they even went as far as trying out "demethylation treatments" like cancer drugs and stuff because some idiots constantly reinforced their ideas.
You dont call other people's views and theories BS also they are not idiots.This is pretty much disrespectfull attitude towards the community. Autoimmune disease is promising idea in my opinion but we dont have to put all eggs in a one basket. This is an open forum for any discussions thats why nobody ban your sometimes pretty bold, unsupported by evidence statments and suggestions btw. I read your posts from time to time. If you are such a huge fan of autoimmune disease theory why haven't you tried corticosteroid yourself yet?
Last edited by BruteForce on Thu Jan 13, 2022 9:25 pm, edited 1 time in total.
bigpoppa10040
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Re: PSSD could be small fiber polyneuropathy

Unread post by bigpoppa10040 »

cdraham wrote: Thu Jan 13, 2022 2:12 pm
bigpoppa10040 wrote: Thu Jan 13, 2022 8:15 am
cdraham wrote: Wed Jan 12, 2022 7:16 pm

Thats pretty easy to figure out. Potent tnf-a inhibitors or corticosteroids should give us a window.

I think you could also measure certain cytokines but noone did that in these communities because everyone was focused on "epigenetic changes" and 5AR / receptor theory which is total BS imo.

Dude couldn’t agree more with you. They had a really good thing going and are a wealth of info but they basically put it up to your body magically made this massive epigenetic change (even with some ppl off the drug for a month), methylation whatever other bullshit. People are dying cause of this conclusion. Like an old user Oscar said, don’t you think pharmaceutical companies would be eating this up and researching if true? No, cause it’s autoimmunity and they don’t want liability. In fact, hurried deep on propeciahelp, some dude wrote to Merck asking them to reveal if in their clinical trials any autoimmune diseases developed….they wouldn’t answer. We already know SSRIs mess with the immune system too.

Totally agree. Honestly I talked to someone who has been on that forum for a decade and he believes they are pushing that theory for research purposes. No researcher is interested in autoimmune diseases but it’s much easier to get the scientific and research community on board when talking about the big buzzwords genetics and epigenetics. It’s painfully obvious this is what happening and any talk about any other cause is immediately thrown away. They even changed their rules the other day basically saying you have to agree with them to move research forward. Bullshit.

Over the history of all forums, people have gotten windows when sick, lack of sleep, and on certain doses of immunosuppressants / corticosteroids.

People can also feel worse which leads me to believe there is something active still happening. Unless it’s like a guillane barre syndrome where the autoimmune attack stops and you’re left with damage but a lot of these people make full recoveries
Honestly propeciahelp mods did more damage to the community than they helped. When people believe this stupid AR and epigenetic change theory, which is totally absurd, people tend to get stuck in a thought loop that there is no way out. Thats how suicides happen.

Just look at poor anhedonicape and other guys that thought they have some irreversible epigentic changes happened to them. they even went as far as trying out "demethylation treatments" like cancer drugs and stuff because some idiots constantly reinforced their ideas.
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