PSSD could be small fiber polyneuropathy

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

Unread post by Integra »

Small fiber polyneuropathy we can see as the same symptom than to indicate that it is the name of our symptoms. And there are hundreds of reasons of it.
Lady Rose
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Re: PSSD could be small fiber polyneuropathy

Unread post by Lady Rose »

I was also thinking about this possibility.
Recently I have read about a new study
Agmatine helps with small Fiber neuropathy

Has anyone Made good experience with Agmatine?
Lady Rose
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Re: PSSD could be small fiber polyneuropathy

Unread post by Lady Rose »

Agmatine (as G- Agmatine®) Effectiveness in Painful Small Fiber Neuropathy | Healthcare Dive
KJP21
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Re: PSSD could be small fiber polyneuropathy

Unread post by KJP21 »

Agmatine is used to alleviate pain. This would not help regenerate any fibers and hence would not improve symptoms of sexual dysfunction.

I really wish people would take the SFP idea more seriously and get the testing done instead of messing around with supplements or pharmaceuticals that target neurotransmitters and receptors.
NoMansLand
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Re: PSSD could be small fiber polyneuropathy

Unread post by NoMansLand »

Not the most common symptom at all. With non-length dependent small fiber neuropathy, most common symptom is brain fog, as far as I’ve been told.
As far as I know this is not correct. Pain is the most common symptom, regardless whether the neuropathy presents itself length dependent or not.

Generally the problem of your hypothesis is it's narrow focus on autonomic symptoms. While it's true that SFN can present as a pure autonomic neuropathy, usually sensory symptoms are present as well in such cases. You should also take into account that SFN is not the only cause of autonomic dysfunction and there are also several other symptoms of autonomic dysfunction in SFN that were not reported in PSSD.
I really wish people would take the SFP idea more seriously and get the testing done instead of messing around with supplements or pharmaceuticals that target neurotransmitters and receptors.
The problem here is that it's very hard to get testing done for SFN. I likely had SFN for the last 10 years (no relationship with my mild to moderate PSSD) and I have only been able to get an appointment for testing in the next few days. I have been denied by 3 other clinics, because knowledge on SFN is not very widespread, although it's probably very common. You should also take into account that if doctors do not see an indication for skin biopsy, then you won't get it or you have to pay for it yourself and that's likely the case, when people tell the doctor, that their symptoms were caused by SSRIs.

However your idea might have some merit. I remember that one study reported abnormal nerve potentials in post-finasteride syndrome. On the other hand, this does not necessarily mean that the nerves are broken, because abnormal function does not necessarily require outright damage to the nerve. For example sodium channel mutations can sometimes cause severe symptoms in the presence of normal skin biopsy results.

But overall I think it might not be a bad idea as a research project to conduct skin biopsies on patients with PSSD, because if small fiber neuropathy was confirmed, then patients with PSSD could benefit from upcoming treatments. A possible treatment would be Pirenzepine, which has been shown to increase nerve fiber density and is currently trialed by the startup WinSanTor as a disease modifying treatment for small fiber neuropathy. Some people on the internet tried this already and those who responded reported improvements in both sensory and/or autonomic symptoms.
Last edited by NoMansLand on Sun Jan 09, 2022 3:00 pm, edited 1 time in total.
Lady Rose
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Re: PSSD could be small fiber polyneuropathy

Unread post by Lady Rose »

Sorry nur how will you Target receptors without pharmaceuticals
KJP21
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Re: PSSD could be small fiber polyneuropathy

Unread post by KJP21 »

The problem here is that it's very hard to get testing done for SFN. I likely had SFN for the last 10 years (no relationship with my mild to moderate PSSD) and I have only been able to get an appointment for testing in the next few days. I have been denied by 3 other clinics, because knowledge on SFN is not very widespread, although it's probably very common. You should also take into account that if doctors do not see an indication for skin biopsy, then you won't get it or you have to pay for it yourself and that's likely the case, when people tell the doctor, that their symptoms were caused by SSRIs.
I recommend reaching out to one of the physicians listed here if you are in the United States: https://neuropathycommons.org/experts-directory/us

I have a very strong hunch that many people here have other SFN symptoms that they don't focus on because the sexual ones seem most devastating. Dry skin? Inability to sweat from arms or legs? Tingling, itchiness, prickling? Numbness in other parts of the body? Burning or chills? Any of these can easily serve as an indication to get the biopsy.
NoMansLand
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Re: PSSD could be small fiber polyneuropathy

Unread post by NoMansLand »

I have a very strong hunch that many people here have other SFN symptoms that they don't focus on because the sexual ones seem most devastating. Dry skin? Inability to sweat from arms or legs? Tingling, itchiness, prickling? Numbness in other parts of the body? Burning or chills? Any of these can easily serve as an indication to get the biopsy.
As I said, although I'm not fully convinced by your idea, I see value in looking into this.

Perhaps this could also be connected to the hypothesis that PSSD might be caused by Small Intestinal Bacterial Overgrowth, if the latter can also cause SFN (did not look into this, so maybe this is bullshit).
Integra
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Re: PSSD could be small fiber polyneuropathy

Unread post by Integra »

electroneuromyography can detect fiber polyneuropathy? Or only double biopsy?
bigpoppa10040
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Re: It is 100% small fiber polyneuropathy

Unread post by bigpoppa10040 »

KJP21 wrote: Sat Jan 08, 2022 11:01 pm That’s only to correct an ongoing autoimmune reaction. It’s likely that for most of us, we had an overnight immune surge and woke up with our symptoms. The autoimmune disorder would be gone in that case - only damage left behind.
Love your work. I’ve been a huge proponent of the autoimmune theory for a long time. Unfortunately, on other forums, it’s weirdly put down aggressively even when members support it. Weird.


Anyway, I think that there could potentially still be an autoimmune reaction occurring. Some people have had great results with immunosuppressants and when they’re sick. Possibly the autoimmune reaction is ongoing and causing our symptoms. This theory has been presented for years across all forums. I’m lucky that I’ve visited top immunologists and have been to top hospitals and the general consensus is that it’s an immune related event / autoimmunity. Makes sense with the crashes. Makes sense that some people crash two weeks off the drug. Makes sense where people get windows. Anyway would love to continue this convo and curious on your thoughts / doctors thoughts.
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