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 »

Ok, good luck, man
Kostakonkordia
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Re: PSSD could be small fiber polyneuropathy

Unread post by Kostakonkordia »

Stummerberg2 wrote: Sat Jan 15, 2022 8:25 am
bigpoppa10040 wrote: Sat Jan 15, 2022 8:16 am
cdraham wrote: Sat Jan 15, 2022 5:21 am



Its because increasing serotonin fucks the gut even more, serotonin is a potent immune cell modulator and can induce autoimmune diseases
This is true. Serotonin is a potent immune system modulator.

I agree with everyone else though. We gotta keep these forums and discussions clean else people will just think we are even more crazy. I don’t think anyone should ever tell anyone else what to do.

If you word it like “if you agree with this theory, one way you can help is getting a biopsy done. You do if this way xyz, it’s harmless and painless but this is completely your decision.”

Or “sibo causing pathogens create biofilms. Some research suggests that bacteria create biofilms that make it impossible for antibiotics to penetrate. If you decide to treate for sibo please make sure you research this before starting or talk to a doctor or naturopathic physician”

See the difference?

Agreed. But this sibo/dysbiosis following has essentially become a cult of uneducated, unintelligent, erratic and arrogant individuals like @cdraham and @Kostakonkordia who are infiltrating threads like this one, and imposing their ridiculous internet "theories" and fixations in an unhinged manner. This needs to stop. This thread needs to remain on topic.
Who do you think you are to call me this things? Wtf?
I'm just trying to give you guys impulses. I understand if you don't want to pick these things up but dinunciating it as a "ridiculous internet theory" is just wrong. What are you doing? You're also just talking about a "ridiculous internet theory", don't play the big guy my dude. I'm not a big guy but I also don't pretend to be one. And the so called "big guys" are mostly idiots. Alot of theories where found by lays whom where just open minded. Will you call you're moderators for help again or insult me? Time will tell, this "ridiculously stupid lastround360" is collecting microbiom analysis data from people on reddit and assisting bunch of them personally. We will see if he is right. If he is not we will find the other cause and I'm ready to admit to false assumptions. Probably not every single one has dysbiosis. We will see...
Brain food
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Re: PSSD could be small fiber polyneuropathy

Unread post by Brain food »

I found that there is a clinical trial going on for a treatment for small fiber neuropathy. Dr. Christopher Gibbons is the principal investigator. The trial assumes a link between an immune reaction and small fiber neuropathy. The study was supposed to be completed on June 1, 2021. I don’t know if went according to schedule of if the pandemic delayed things.

https://clinicaltrials.gov/ct2/show/NCT03401073
flexstar13
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Re: PSSD could be small fiber polyneuropathy

Unread post by flexstar13 »

Mad an update on my last post because I got someantibodies tested and the results hints to Small Fiber Neuropathy:


negative for anti-FGF Receptor- 3 antibodies ( in range)

positive for Anti-TSHDS-IgM-Antibidies 10.3 (<9)
sopgirl
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Re: PSSD could be small fiber polyneuropathy

Unread post by sopgirl »

flexstar13 wrote: Sun Apr 24, 2022 3:54 am Mad an update on my last post because I got someantibodies tested and the results hints to Small Fiber Neuropathy:


negative for anti-FGF Receptor- 3 antibodies ( in range)

positive for Anti-TSHDS-IgM-Antibidies 10.3 (<9)
Very interesting! What did your doctor say?
6-Eggs!
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Re: PSSD could be small fiber polyneuropathy

Unread post by 6-Eggs! »

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.
bigpoppa10040
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Re: PSSD could be small fiber polyneuropathy

Unread post by bigpoppa10040 »

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
bigpoppa10040
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Re: It is 100% small fiber polyneuropathy

Unread post by bigpoppa10040 »

KJP21 wrote: Sat Jan 08, 2022 10:44 pm 1. Get the biopsies. If all or most of us show polyneuropathy, this objectively arms us to get recourse from pharm.

2. Get the full autoimmune panel to rule out any active response.

3. Small fibers can regenerate overtime if the underlying cause is alleviated.

Did you see flexstars results
KJP21
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Re: PSSD could be small fiber polyneuropathy

Unread post by KJP21 »

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).
flexstar13
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Re: PSSD could be small fiber polyneuropathy

Unread post by flexstar13 »

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?
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