PSSD could be small fiber polyneuropathy

This is for hypothesis and even educated speculation.
bigpoppa10040
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Re: PSSD could be small fiber polyneuropathy

Unread post by bigpoppa10040 »

KJP21 wrote: Thu Apr 28, 2022 3:40 pm Hey all - so I kind of stopped posting here because I don't think the majority of people on this forum want to be productive. They are so fixated on finding a supplement to magically and suddenly reverse their condition, and the PFS lobby is really trying to wrap our condition up with theirs and focus on androgen receptor issues.

All I can say is that small fiber neuropathy has been confirmed in my case and those of others who followed my advice. Non-length dependent SFN has no cure, so that's the sad news. It thought that NLD SFN is driven by an autoimmune condition, though there are no known therapies. In some lucky few, IVIG or a round of steroids seems to recent their immune system and allow for nerve function to begin to restore (though it's unlikely that it will ever be back to normal).
No doubt it’s so difficult finding 1. People who actually have the condition and aren’t dealing with something else / are just internet weirdos. 2. Pfs community has done a ton for the community but yeah I agree they’re missing the mark now. 3. So my biggest question is if it is indeed SFN through an autoimmune mechanism, according to the doctors you know, is the autoimmune reaction still ongoing? According to flexstars IGM results, it’s still ongoing. If we had a massive autoimmune reaction and now it’s stopped and we are left with damage (like guillan bare syndrome) then yeah it’s gonna be tough. However all the doctors I spoke with believe it’s still ongoing autoimmune reaction. Throughout the history of all forums, people feel better when sick, sleep deprived or on immune suppressants. Idk if the damage is 100% reversible but I can tell u being in the medical field the body is absolutely amazing. People do heal from autoimmune diseases. If the damage is done , it’ll be tough, but if we can stop the damage then there may be some real real hope
bigpoppa10040
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Re: PSSD could be small fiber polyneuropathy

Unread post by bigpoppa10040 »

Also PFS did a study on penile tissue and found no SFN which is interesting
JLo22
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Re: PSSD could be small fiber polyneuropathy

Unread post by JLo22 »

Can you post the link to the PFS study?
KJP21
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Re: PSSD could be small fiber polyneuropathy

Unread post by KJP21 »

bigpoppa10040 wrote: Thu Apr 28, 2022 4:32 pm
KJP21 wrote: Thu Apr 28, 2022 3:40 pm Hey all - so I kind of stopped posting here because I don't think the majority of people on this forum want to be productive. They are so fixated on finding a supplement to magically and suddenly reverse their condition, and the PFS lobby is really trying to wrap our condition up with theirs and focus on androgen receptor issues.

All I can say is that small fiber neuropathy has been confirmed in my case and those of others who followed my advice. Non-length dependent SFN has no cure, so that's the sad news. It thought that NLD SFN is driven by an autoimmune condition, though there are no known therapies. In some lucky few, IVIG or a round of steroids seems to recent their immune system and allow for nerve function to begin to restore (though it's unlikely that it will ever be back to normal).
No doubt it’s so difficult finding 1. People who actually have the condition and aren’t dealing with something else / are just internet weirdos. 2. Pfs community has done a ton for the community but yeah I agree they’re missing the mark now. 3. So my biggest question is if it is indeed SFN through an autoimmune mechanism, according to the doctors you know, is the autoimmune reaction still ongoing? According to flexstars IGM results, it’s still ongoing. If we had a massive autoimmune reaction and now it’s stopped and we are left with damage (like guillan bare syndrome) then yeah it’s gonna be tough. However all the doctors I spoke with believe it’s still ongoing autoimmune reaction. Throughout the history of all forums, people feel better when sick, sleep deprived or on immune suppressants. Idk if the damage is 100% reversible but I can tell u being in the medical field the body is absolutely amazing. People do heal from autoimmune diseases. If the damage is done , it’ll be tough, but if we can stop the damage then there may be some real real hope
Agree that it is likely ongoing. Even if it were a massive autoimmune reaction, if it had stopped, you'd see a decent amount of recovery.
KJP21
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Re: PSSD could be small fiber polyneuropathy

Unread post by KJP21 »

flexstar13 wrote: Thu Apr 28, 2022 4:22 pm
KJP21 wrote: Thu Apr 28, 2022 3:40 pm
All I can say is that small fiber neuropathy has been confirmed in my case and those of others who followed my advice. Non-length dependent SFN has no cure, so that's the sad news. It thought that NLD SFN is driven by an autoimmune condition, though there are no known therapies. In some lucky few, IVIG or a round of steroids seems to recent their immune system and allow for nerve function to begin to restore (though it's unlikely that it will ever be back to normal).
May I ask what test confirmed SFN for you? And what is IVIG?
Where did you get your very specialized antibody test? I'm assuming WashU? Skin biopsy confirmed it for me.

IVIG: intravenous immune globulin
sopgirl
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Re: PSSD could be small fiber polyneuropathy

Unread post by sopgirl »

KJP21 wrote: Thu Apr 28, 2022 3:40 pm Hey all - so I kind of stopped posting here because I don't think the majority of people on this forum want to be productive. They are so fixated on finding a supplement to magically and suddenly reverse their condition, and the PFS lobby is really trying to wrap our condition up with theirs and focus on androgen receptor issues.

All I can say is that small fiber neuropathy has been confirmed in my case and those of others who followed my advice. Non-length dependent SFN has no cure, so that's the sad news. It thought that NLD SFN is driven by an autoimmune condition, though there are no known therapies. In some lucky few, IVIG or a round of steroids seems to recent their immune system and allow for nerve function to begin to restore (though it's unlikely that it will ever be back to normal).
I'm glad that you've found some answers. Unfortunately, in my healthcare system it would be very difficult for me to get a skin biopsy done and going private would be ruinously expensive.

I'm curious, besides the 'standard' PSSD genital symptoms, do you have any of the more standard peripheral symptoms expected with NLD SFN? Besides the paper you linked to upthread, most sources on SFN only hint at sexual dysfunction as a possible symptom of many, concentrating more on pain and paraesthesia. It's interesting that if a significant proportion of us with PSSD actually have some degree of SFN that our condition is predominantly genital-based.
KJP21
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Re: PSSD could be small fiber polyneuropathy

Unread post by KJP21 »

sopgirl wrote: Thu Apr 28, 2022 8:13 pm
KJP21 wrote: Thu Apr 28, 2022 3:40 pm Hey all - so I kind of stopped posting here because I don't think the majority of people on this forum want to be productive. They are so fixated on finding a supplement to magically and suddenly reverse their condition, and the PFS lobby is really trying to wrap our condition up with theirs and focus on androgen receptor issues.

All I can say is that small fiber neuropathy has been confirmed in my case and those of others who followed my advice. Non-length dependent SFN has no cure, so that's the sad news. It thought that NLD SFN is driven by an autoimmune condition, though there are no known therapies. In some lucky few, IVIG or a round of steroids seems to recent their immune system and allow for nerve function to begin to restore (though it's unlikely that it will ever be back to normal).
I'm glad that you've found some answers. Unfortunately, in my healthcare system it would be very difficult for me to get a skin biopsy done and going private would be ruinously expensive.

I'm curious, besides the 'standard' PSSD genital symptoms, do you have any of the more standard peripheral symptoms expected with NLD SFN? Besides the paper you linked to upthread, most sources on SFN only hint at sexual dysfunction as a possible symptom of many, concentrating more on pain and paraesthesia. It's interesting that if a significant proportion of us with PSSD actually have some degree of SFN that our condition is predominantly genital-based.
You might find this article interesting: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5999027/

I'm not saying every PSSD case is SFN. Hell, I don't believe that everyone who thinks they have PSSD even has it. But to answer your question, my understanding is that most SFN symptom lists are written for traditional LD SFN. NDL SFN symptoms may or may not include the paresthesias. My understanding is that the most common symptom is gastro issues.
NoMansLand
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Re: PSSD could be small fiber polyneuropathy

Unread post by NoMansLand »

You might find this article interesting: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5999027/
That's indeed interesting, because the two cases did not report any symptoms on body parts other than their genitals. This shows that SFN could principally be a cause for PSSD and supports your point.
6-Eggs!
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Re: PSSD could be small fiber polyneuropathy

Unread post by 6-Eggs! »

bigpoppa10040 wrote: Tue Apr 26, 2022 4:40 pm
6-Eggs! wrote: Tue Apr 26, 2022 1:21 am I had a full immunology and nerve study as my doctors initially suspected MS, GBS, CIDP etc. All tests were negative. Full head to toe MRIs, no structural changes or inflammation.

I am seeing Dr Victor Chong, top neurologist in southern hemisphere when it comes to autoimmune neuro diseases. My symptoms are about half similar to the OP but rapidly changing, mins, secs to hours and sometimes but more rarely over weeks. Overall I have seen massive improvement over the last 3 months after reinstating a microdose to attempt a taper again but much slower to allow my brain to adapt and to stop the progression of the symptoms that was happening from Nov to Jan. So far so good. I would of stayed off them but my mental and physical state was spiraling down out of control very quick. The micro dose halted that and allow the healing to start and settle before tapering again. My Neuro doc agrees with another neuro who assessed my at the hospital with the drug induced FND. My mental state has influence on my physical symptoms and I have mental control over some of the symptoms now. For me it's been confirmed to be a functional brain issue caused by serotonin manipulation. I have had a history with serotonin drug intolerance.

I am not saying immune system isn't involved but I think it's far more complex and different for each person and drug used. My immune system is actually weakened since I got unwell from withdrawal of Rexulti, 3 colds and 3 bouts of shingles since November. I would only get sick once every 2-3 years prior to that and I was like that most of my life. I also had infections in my fingers that lasted weeks that would normally only last 2-3 days. I'd say this is due to the immense stress of becoming basically disabled.

Sickness had no effect of my neuro symptoms, neither does booze. Although I do find lack of sleep makes my sensory/mental symptoms worse and they instantly recover to previous or better after a good sleep, particular the drug induced tinnitus. But I have had tinnitus before from bad sleep deprivation so I feel this is nothing new. My drug induced tinnitus does go away back to base level if I get constant good sleep for at least a few weeks. Atm that is not so much as I have just halved my micro dose again so that's the reason.
A full immunology test doesn’t mean much in the medical world. Finding a novel autoimmune disease, if indeed autoimmune, is like finding a needle in a haystack. Flexstar found antibodies that could explain our condition and they’re IGM which means active and ongoing attack
I mean yeah, maybe for some people but I don't think all people with PSSD and related disorders are autoimmune. For those that are in the autoimmune camp, it could well be manifestation of a more complex cascade of problems triggered by the medication.
I do plan to ask my doc to rule out SFN and do the same blood tests if they are available here in Aus, but my symptoms change way too fast with "crashes" often full recovery often spanning over minutes to days at most with most common period being 30-60 min. No nerve fibers can recover than fast. They literally take weeks to even start improving. Iirc 6 weeks min? Also I am pretty certain my mental control over some of my symptoms can't be SFN, especially being able to control my hands and feet sweating consciously which I couldn't even do before I got sick in the first place and indicates some weird cross communication going on in the CNS, this is also true for my flaccid glans, I have mental control over it most times now, interdependently to what the rest of my penis is doing and recently been able to control certain areas of the glans and urethra somewhat independently, super weird but insightful .
HzeTmy
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Re: PSSD could be small fiber polyneuropathy

Unread post by HzeTmy »

Does "red light therapy" or infrared lamps heal small fiber neuropathy ? I remember somewhere i read it as a option to cure PSSD that's why i ask.
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