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 »

bigpoppa10040 wrote: Mon Jan 10, 2022 11:21 am
Integra wrote: Mon Jan 10, 2022 11:16 am
bigpoppa10040 wrote: Mon Jan 10, 2022 10:04 am

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
so I don't want to argue. I wrote above that we will establish that this is a small fiber polyneuropathy. What's next?
NoMansLand
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Re: PSSD could be small fiber polyneuropathy

Unread post by NoMansLand »

I think the bottom line at this point is that we need a significant number of people on this forum and the facebook group to get skin biopsy done, preferably those who have a huge range of symptoms following SSRI use. Otherwise we are going to walk in circles in this discussions.
What's next?
As I said above, Pirenzepine and some other drugs currently in development show potential for regenerating small fibers. If PSSD was small fiber neuropathy, then they could treat PSSD.

However according to animal studies the PDE-5-inhibitor Tadalafil may also be able to regrow small fibers and my guess is that some people with PSSD already tried Tadalafil with no results.
KJP21
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Re: PSSD could be small fiber polyneuropathy

Unread post by KJP21 »

Then, at least we have a diagnosis. Maybe future treatments down the range, maybe legal recourse with objective evidence. I have already started my lawsuit.

I don't understand your slight antagonism towards my post, etc. It's almost like you are upset that it might be something that you cannot cure/cure overnight and taking it out on the theory.

I would love it if others got proper evaluation in regards to SFN - would be happy to include you on the legal action if in the US.
Brain food
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Re: PSSD could be small fiber polyneuropathy

Unread post by Brain food »

This theory makes a lot of sense. I used to always feel this tightness in my joints. Since I was in first grade, I would constantly crack my knuckles. I thought that Sertraline was “working” because I would crack my knuckles less while on it. Since I’ve had PSSD, I barely ever feel the urge to crack my knuckles. I think that small fibers around the entire body might be affected by this condition. Has anyone else had similar experiences?
Integra
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Re: PSSD could be small fiber polyneuropathy

Unread post by Integra »

I just try to be critical of any theories. As for yours, on the contrary, I copied and posted your post on reddit and in a group on Facebook. Of course, with your nickname in order to attract more people to the discussion.
But a biopsy requires a lot of people.
As for the lawsuit, the idea is good, but I find it difficult to imagine the evidence. I am a lawyer myself and it is difficult to see a positive result in the case, but I wish you success.
bigpoppa10040
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Re: PSSD could be small fiber polyneuropathy

Unread post by bigpoppa10040 »

If it’s an ongoing autoimmune reaction, there’s potential for massive healing with treatment. Not every case is uniform. There was a guy on here who made a post about corticosteroids temporarily relieving all symptoms. Immunosuppressants across all forums have yielded good results (in some cases). One guy even went to Mayo Clinic and got an infusion of methylprednison and claims it cured him. What I’m saying is all is not lost if it’s autoimmune/SFN or some variation. In fact, there could be potential to gain everything back
Integra
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Re: PSSD could be small fiber polyneuropathy

Unread post by Integra »

I have lyme, which is very difficult to treat in the chronic form, and one doctor prescribed me immunosuppressants, but I refused, as a fairly large list of side effects and cost. I would like to do biopsy, to test your theory but unfortunately due to lyme I don't know if this will be correct since i already had polyneuropathy before pssd.
KJP21
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Re: PSSD could be small fiber polyneuropathy

Unread post by KJP21 »

So that's an important thing to note, that I don't think the reasons here are so binary. In my case, while I had some light symptoms of PSSD, they were worsened by a bad case of the flu in late 2019 and then COVID 19 vaccines. My best guess, and I reiterate that this is a guess, is that once you take away the immunosuppressant effects of SSRIs, our bodies start an autoimmune reaction and then fuel is poured on to the fire by events like an illness or vaccines, etc.
KJP21
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Re: PSSD could be small fiber polyneuropathy

Unread post by KJP21 »

Actually, I have been told by a very reliable and successful attorney in the space that with a few dozen concluding biopsies/medical diagnoses, combined with anecdotal evidence of symptom onset after discontinuation, that the case would not be that hard at all. The biopsies provide objective evidence and steer the conversation away from "mental illness", which currently provides reasonable doubt in cases of withdrawal, etc.

One more thing to note. The biopsies are painless. They leave a very small 3mm by 3mm crater at the site. This eventually fills in and you are left with an almost unnoticeable scar around the size of a half a rice grain.
Integra
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Re: PSSD could be small fiber polyneuropathy

Unread post by Integra »

But we have a problem that will affect the sample. As you know, some people have symptoms while taking antidepressants, some after they stop. What to do with the first? Yes, this is a side effect of antidepressants that should have disappeared after discontinuation. But they do not disappear, then how exactly do we establish the moment of the autoimmune reaction? There are stories where people have been on antidepressants for years, but when they switched to a higher dose, the symptoms showed up.
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