PSSD could be small fiber polyneuropathy

[Brain food]

Healy is doing this for himself. Getting the EMA to recognize the condition via his petition gets him attention. If he truly cared about the condition, he would do some non-keyboard warrior research.

How many people are in the NY or Boston area and would be willing to have the biopsies done if paid for?

As you guys have linked other posts, etc., we’ve only seen more evidence of small fiber neuropathy diagnoses that were totally ignored by the posters only to keep focusing on neurotransmitters…I don’t get it.

The facts are simple. Changes in neurotransmitter/androgen levels/receptors don’t lead to fiber damage. Immune system attacks do. It’s really that simple.

Do you have examples of other diseases or syndromes where the immune system causes fiber damage?

[Integra]

Healy is doing this for himself. Getting the EMA to recognize the condition via his petition gets him attention. If he truly cared about the condition, he would do some non-keyboard warrior research.

How many people are in the NY or Boston area and would be willing to have the biopsies done if paid for?

As you guys have linked other posts, etc., we’ve only seen more evidence of small fiber neuropathy diagnoses that were totally ignored by the posters only to keep focusing on neurotransmitters…I don’t get it.

The facts are simple. Changes in neurotransmitter/androgen levels/receptors don’t lead to fiber damage. Immune system attacks do. It’s really that simple.

Do you have examples of other diseases or syndromes where the immune system causes fiber damage?

https://www.reddit.com/r/smallfiberneur ... urce=share

[KJP21]

Healy is doing this for himself. Getting the EMA to recognize the condition via his petition gets him attention. If he truly cared about the condition, he would do some non-keyboard warrior research.

How many people are in the NY or Boston area and would be willing to have the biopsies done if paid for?

As you guys have linked other posts, etc., we’ve only seen more evidence of small fiber neuropathy diagnoses that were totally ignored by the posters only to keep focusing on neurotransmitters…I don’t get it.

The facts are simple. Changes in neurotransmitter/androgen levels/receptors don’t lead to fiber damage. Immune system attacks do. It’s really that simple.

Do you have examples of other diseases or syndromes where the immune system causes fiber damage?

Most immune diseases attack C fibers. Sjogrens is the most commonly tested for. They all cause genital numbness.

[ryjoseph97]

I don't have any outward signs of hormone dysregulation, such as muscular atrophy (although my T levels were 357). I'm definitely weaker but I think this is because I stopped working out, due to anhedonia. My PSSD got significantly worse after I had hives in 2020. However, I am not sure if the hives exacerbated the pssd or if it was the prednisone. Either way, I have slowly and slightly recovered some of my cognitive function since then, although I am not nearly as sharp.

I don't have most of the symptoms you listed. My condition just feels like a dysregulation of my emotions, feeling like I got hit by a truck every time I wake up, and loss of sexual pleasure (maybe 30% of what it was before ssri). Regardless, I see my functional medicine practitioner on the 20th and I'll ask for a referral for fiber damage.

Edit: I read the list of symptoms again and am slapping myself because all of the symptoms I listed actually fall into your list in some way.

[KJP21]

Can you elaborate which symptoms please? I think we are close to a breakthrough.

[ryjoseph97]

Sure. You mentioned dysregulation of the sleep/wake cycle, emotions, and sexual functioning. Those are the three symptoms I have. I don't have any pain or tingling, though. I do remember that when I was on ssri/snri, especially venlafaxine, I almost always had tingling in my hands and feet upon waking up in the morning. Might not be relevant but I thought it was worth mentioning.

[KJP21]

The tingling in the hands while on the drug is relevant to the extent that your nerve function (length dependent) was altered while on the med.

Without any sensory or skin related symptoms now, seems unlikely that you have small fiber neuropathy.

[bigpoppa10040]

I think it’s crucial to somehow find out if there is still an active autoimmune process. We could stop the damage and give all of us the best chance of recovery if true. Many things suggest that there may still be an ongoing reaction. I just don’t know the next steps to take.

[Integra]

Let's be realistic. The topic is interesting, but we will not recruit people with a biopsy.

[cdraham]

I think it’s crucial to somehow find out if there is still an active autoimmune process. We could stop the damage and give all of us the best chance of recovery if true. Many things suggest that there may still be an ongoing reaction. I just don’t know the next steps to take.

Thats pretty easy to figure out. Potent tnf-a inhibitors or corticosteroids should give us a window.

I think you could also measure certain cytokines but noone did that in these communities because everyone was focused on "epigenetic changes" and 5AR / receptor theory which is total BS imo.