PSSD could be small fiber polyneuropathy

This is for hypothesis and even educated speculation.
Integra
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Re: It is 100% small fiber polyneuropathy

Unread post by Integra »

bigpoppa10040 wrote: Sun Jan 09, 2022 10:13 pm
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.
"Immune related event / autoimmunity". Ok, so suppose this is the case. Did biopsy, get positive results. What are our next steps? I was on subreddit of sfn and there are no cure, only possible treatment, which does not help everyone.
Integra
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Re: PSSD could be small fiber polyneuropathy

Unread post by Integra »

I still don't think that's the reason for the immune response. People did various tests, including an autoimmune panel, but for some reason found nothing but a few cases of lyme. It is clear that there are symptoms of disorders of the autonomic system and most likely we have severe nerve intoxication. That's all. There is no solution in this case. Unless you want to finish the system.
Second variant is change in epigenetic genes. PFS group got their research and see more than 3,000 altered genes. I think our situation is similar.
bigpoppa10040
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Re: PSSD could be small fiber polyneuropathy

Unread post by bigpoppa10040 »

Integra wrote: Mon Jan 10, 2022 8:22 am I still don't think that's the reason for the immune response. People did various tests, including an autoimmune panel, but for some reason found nothing but a few cases of lyme. It is clear that there are symptoms of disorders of the autonomic system and most likely we have severe nerve intoxication. That's all. There is no solution in this case. Unless you want to finish the system.
Second variant is change in epigenetic genes. PFS group got their research and see more than 3,000 altered genes. I think our situation is similar.
Negative results on an autoimmune panel absolutely do not rule out an autoimmune disease. This is far far from the truth. We are in our infant stages at diagnosing autoimmune diseases and often times in clinical studies scientists have to have a clinical suspicion for what the autoantibody is against and then actually test against it to confirm. Anyway I think this thread is for people who believe in an immune related process for pssd Pfs pas. Epigentic theory has plenty of its own threads, not that I’m not happy to discuss but over the years threads get derailed with people arguing which one is right and which one isn’t. We have OP and myself who have seen top clinical immunologists and neurologists who have concluded that. Not to mention hundreds of other members as well. It would explain a ton of our weird and fluctuating symptoms. Also if it really is small fiber neuropathy induced by an ongoing autoimmune disease ( which is the majority of cases in non length dependent small fiber neuropathy) this would be a massive massive win for our community. Sometimes and often times there can be clinical improvement with immune modifying drugs. Perhaps this is also why there are random recoveries with diets and or addressing the microbiome
KJP21
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Re: PSSD could be small fiber polyneuropathy

Unread post by KJP21 »

So, because there is no solution involving people taking a variety of supplements / drugs to hit / block certain receptors, this can’t be the answer? This speaks exactly to the issue on this forum and survivingantidepressants and Reddit. Instead of searching for an understanding by practicing medicine that is understood, it’s almost like people have found a new hobby in neuroscience (specifically trying to simplify effects of neurotransmitters which are so complex and have many cascading effects that are impossible to yet map). I think this is due to the quick fix / give me a new drug mindset. People want to pop a pill and resolve it.

I’m not saying every single person has their PSSD rooted in SFN. Heck, I don’t even believe every single person has PSSD. Some may actually just be depressed. But I’ve seen a lot of cases that clearly warrant checking for this as a cause.

Idiopathic SFN is usually caused be autoimmune reactions that we cannot test for. 50% of SFN cases are idiopathic.

I wouldn’t worry too much about epigenetic changes. This happens with any drug or stimulus.
bigpoppa10040
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Re: PSSD could be small fiber polyneuropathy

Unread post by bigpoppa10040 »

KJP21 wrote: Mon Jan 10, 2022 10:14 am So, because there is no solution involving people taking a variety of supplements / drugs to hit / block certain receptors, this can’t be the answer? This speaks exactly to the issue on this forum and survivingantidepressants and Reddit. Instead of searching for an understanding by practicing medicine that is understood, it’s almost like people have found a new hobby in neuroscience (specifically trying to simplify effects of neurotransmitters which are so complex and have many cascading effects that are impossible to yet map). I think this is due to the quick fix / give me a new drug mindset. People want to pop a pill and resolve it.

I’m not saying every single person has their PSSD rooted in SFN. Heck, I don’t even believe every single person has PSSD. Some may actually just be depressed. But I’ve seen a lot of cases that clearly warrant checking for this as a cause.

Idiopathic SFN is usually caused be autoimmune reactions that we cannot test for. 50% of SFN cases are idiopathic.

I wouldn’t worry too much about epigenetic changes. This happens with any drug or stimulus.
Right there with you. Couldn’t agree more with your response. It’s refreshing. I think if it is an ongoing autoimmune response then there is some serious potential for healing to occur whether that’s naturally, with medicine, or a combo of both. Throughout the history of all forums, we have seen ppl use medicine, natural methods, or a combo of both to induce healing.
NoMansLand
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Re: PSSD could be small fiber polyneuropathy

Unread post by NoMansLand »

KJP21 wrote: Mon Jan 10, 2022 10:14 amIdiopathic SFN is usually caused be autoimmune reactions that we cannot test for.
I'm not sure if I remember it correctly, but I think IVIG was tested on people with idiopathic SFN and yielded disappointing results.
Integra
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Re: PSSD could be small fiber polyneuropathy

Unread post by Integra »

bigpoppa10040 wrote: Mon Jan 10, 2022 10:04 am
Integra wrote: Mon Jan 10, 2022 8:22 am I still don't think that's the reason for the immune response. People did various tests, including an autoimmune panel, but for some reason found nothing but a few cases of lyme. It is clear that there are symptoms of disorders of the autonomic system and most likely we have severe nerve intoxication. That's all. There is no solution in this case. Unless you want to finish the system.
Second variant is change in epigenetic genes. PFS group got their research and see more than 3,000 altered genes. I think our situation is similar.
Negative results on an autoimmune panel absolutely do not rule out an autoimmune disease. This is far far from the truth. We are in our infant stages at diagnosing autoimmune diseases and often times in clinical studies scientists have to have a clinical suspicion for what the autoantibody is against and then actually test against it to confirm. Anyway I think this thread is for people who believe in an immune related process for pssd Pfs pas. Epigentic theory has plenty of its own threads, not that I’m not happy to discuss but over the years threads get derailed with people arguing which one is right and which one isn’t. We have OP and myself who have seen top clinical immunologists and neurologists who have concluded that. Not to mention hundreds of other members as well. It would explain a ton of our weird and fluctuating symptoms. Also if it really is small fiber neuropathy induced by an ongoing autoimmune disease ( which is the majority of cases in non length dependent small fiber neuropathy) this would be a massive massive win for our community. Sometimes and often times there can be clinical improvement with immune modifying drugs. Perhaps this is also why there are random recoveries with diets and or addressing the microbiome
"Negative results on an autoimmune panel absolutely do not rule out an autoimmune disease".

Ok. how then will we find out what kind of autoimmune disease it is? U can't take any random immune modifying drugs.
I do not deny the possibility of small fiber polyneuropathy, but I want to see what it gives us. Besides, how u explain why some people have only sexual dysfunction? Some have sexual dysfunction + emotional problems? Not autoimmune.
bigpoppa10040
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Re: PSSD could be small fiber polyneuropathy

Unread post by bigpoppa10040 »

NoMansLand wrote: Mon Jan 10, 2022 10:53 am
KJP21 wrote: Mon Jan 10, 2022 10:14 amIdiopathic SFN is usually caused be autoimmune reactions that we cannot test for.
I'm not sure if I remember it correctly, but I think IVIG was tested on people with idiopathic SFN and yielded disappointing results.
Well I think this is clearly not the classic definition of SFN but rather the nerves involved with SFN are being affected. In non length dependent SFN it appears people get results but depends on what condition, length of time since onset, severity etc
bigpoppa10040
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Re: PSSD could be small fiber polyneuropathy

Unread post by bigpoppa10040 »

Integra wrote: Mon Jan 10, 2022 11:16 am
bigpoppa10040 wrote: Mon Jan 10, 2022 10:04 am
Integra wrote: Mon Jan 10, 2022 8:22 am I still don't think that's the reason for the immune response. People did various tests, including an autoimmune panel, but for some reason found nothing but a few cases of lyme. It is clear that there are symptoms of disorders of the autonomic system and most likely we have severe nerve intoxication. That's all. There is no solution in this case. Unless you want to finish the system.
Second variant is change in epigenetic genes. PFS group got their research and see more than 3,000 altered genes. I think our situation is similar.
Negative results on an autoimmune panel absolutely do not rule out an autoimmune disease. This is far far from the truth. We are in our infant stages at diagnosing autoimmune diseases and often times in clinical studies scientists have to have a clinical suspicion for what the autoantibody is against and then actually test against it to confirm. Anyway I think this thread is for people who believe in an immune related process for pssd Pfs pas. Epigentic theory has plenty of its own threads, not that I’m not happy to discuss but over the years threads get derailed with people arguing which one is right and which one isn’t. We have OP and myself who have seen top clinical immunologists and neurologists who have concluded that. Not to mention hundreds of other members as well. It would explain a ton of our weird and fluctuating symptoms. Also if it really is small fiber neuropathy induced by an ongoing autoimmune disease ( which is the majority of cases in non length dependent small fiber neuropathy) this would be a massive massive win for our community. Sometimes and often times there can be clinical improvement with immune modifying drugs. Perhaps this is also why there are random recoveries with diets and or addressing the microbiome
"Negative results on an autoimmune panel absolutely do not rule out an autoimmune disease".

Ok. how then will we find out what kind of autoimmune disease it is? U can't take any random immune modifying drugs.
I do not deny the possibility of small fiber polyneuropathy, but I want to see what it gives us. Besides, how u explain why some people have only sexual dysfunction? Some have sexual dysfunction + emotional problems? Not autoimmune.

I would say this is a hallmark of autoimmune disorders. Varying, non uniform symptoms. For example some people with ankylosing spondylitis have only si joint symptoms where as others can have full blown spine messed up and calcified and can’t move. I’m not here to argue who is right or who is wrong I’m just here to talk to the OP and others who agree it’s something along the lines of what we think it is
Integra
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Re: PSSD could be small fiber polyneuropathy

Unread post by Integra »

bigpoppa10040 wrote: Mon Jan 10, 2022 11:19 am
NoMansLand wrote: Mon Jan 10, 2022 10:53 am
KJP21 wrote: Mon Jan 10, 2022 10:14 amIdiopathic SFN is usually caused be autoimmune reactions that we cannot test for.
I'm not sure if I remember it correctly, but I think IVIG was tested on people with idiopathic SFN and yielded disappointing results.
Well I think this is clearly not the classic definition of SFN but rather the nerves involved with SFN are being affected. In non length dependent SFN it appears people get results but depends on what condition, length of time since onset, severity etc
But we still come to the conclusion that it is a symptom, not a cause. And this is not the case where we can just cure one symptom and all the others disappear
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