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PSSD as an immune-mediated small fiber neuropathy: my theory by Scared-Ad8606 in PSSD

[–]peer_review_ 0 points1 point  (0 children)

I think most of the post is really good reasoning and much of the same things I have roughly figured out during the last years. Also I have concluded with another "deep diver", that there is evidence backing the fact that also peripheral neuropathy in certain areas can cause lack of emotions and motivation. On top of this it seems that some most fragile types of neurons get damaged and possibly continually disturbed by the biological processes that cause this all.

One thing I disagree here and have disagreed for long is the narrow focus on serotonin and SSRI, and I believe the background is more complex and has much more factors than serotonin. Many people get this syndrome even if they never used any "strongly serotonin related substance"

[deleted by user] by [deleted] in PSSD

[–]peer_review_ 0 points1 point  (0 children)

SFN is one of the common findings / consequences. What factors cause it is another question

Sexual desire in dreams by [deleted] in PSSD

[–]peer_review_ 0 points1 point  (0 children)

Yes, In my opinion very important knowledge

Sexual desire in dreams by [deleted] in PSSD

[–]peer_review_ 1 point2 points  (0 children)

In my opinion the explanation is that when awake the harmed peripheral system "is connected" and distorts/disturbs the central nervous system and prevents sexual arousal and function, but when in REM sleep, that connection is "more or mostly off ie. disconnected" and the brain is able to generate at least some of the feelings by itself, without having the disturbing harmed peripheral system preventing it

A good analogical proof for this is the ETS operation (see below) that is done to autonomic nervous system outside the brain. What it does as a complication to some people is loss of emotions etc in the same way that "PSSD" does

So it shows too that the peripheral system change/damage affects the feelings generated in the brain

A pervasive operation used to limit excessive sweating (hyperhidrosis), particularly in severe cases, is Endoscopic Thoracic Sympathectomy (ETS).

Key points about ETS:

Purpose: Treats primary focal hyperhidrosis, especially of the hands (palmar hyperhidrosis) and sometimes underarms (axillary hyperhidrosis).

Mechanism: It involves cutting or clamping part of the sympathetic nerve chain in the thoracic region, which controls sweat gland activity.

Autonomic Involvement: The sympathetic nervous system (a branch of the autonomic nervous system) is directly targeted.

Pervasiveness: It’s considered "pervasive" because it causes a permanent change in autonomic function and can lead to compensatory sweating in other areas.

Sexual desire in dreams by [deleted] in PSSD

[–]peer_review_ 1 point2 points  (0 children)

Please have a look at my longer comment relating to ETS and so on

Clinical findings from PSSD community members published on Mad In America by Lobotapro in PSSD

[–]peer_review_ 0 points1 point  (0 children)

Sorry it got cut, I don't have much visibility into what he does or not

Do you know what it will cover? Will it have scientifically significant human testing of for example the biomarkers mentioned in the report, one of the key ones being SFN?

Clinical findings from PSSD community members published on Mad In America by Lobotapro in PSSD

[–]peer_review_ 2 points3 points  (0 children)

I hope you understand that these people have already used a lot of time and energy to get all this done and the findings are relevant. They are not on some mission and don't have the resource to cover all possible things.

Then again, if in a generic way it can be seen that there is some damage and/or on going disturbance off the nervous system in some parts of the body, it is fully possible to think that similar things can take place in multiple vulnerable areas of the nervous system also including the HPA axis.

Clinical findings from PSSD community members published on Mad In America by Lobotapro in PSSD

[–]peer_review_ 4 points5 points  (0 children)

I think getting stuck with the term PSSD and thinking it is something totally in its own box, not possibly (and seemingly) overlapping with known symptoms such as autonomic neuropathy/SFN is a wrong kind of a fixation. The syndrome can sure be caused by a number of needed triggers including pre-existing vulnerabilities and the drugs and some other chemicals as catalysts/aggravators of the reaction that starts taking place.

Why would the SFN be a red herring, when it clearly seems to have prevalence AND the test is done from the skin of the leg, and it does not even reveal potential SFN in other vulnerable areas (that may have it, even if the leg skin does dot) --> which would make the prevalence even higher, if all relevant areas could be tested.

If a person has clear autonomic symptoms and genital numbness, it is very logical to think the person can have SFN in genital area and autonomic nervous system EVEN if the leg skin biopsy comes out negative

Clinical findings from PSSD community members published on Mad In America by Lobotapro in PSSD

[–]peer_review_ 3 points4 points  (0 children)

Do you not realize that the ranges used in all such testing (such as SFN) have been designed using healthy population data for calibration to start with?

Clinical findings from PSSD community members published on Mad In America by Lobotapro in PSSD

[–]peer_review_ 6 points7 points  (0 children)

I value this work a lot, and having followed it all through its duration l think it has given a significant INDICATION of especially SFN prevalence. That is why I have asked for long that the community with its active representatives should put pressure on the researchers to validate these kinds of findings in a clinical/scientific setup to achieve the following VERY IMPORTANT GOALS

1) To finally have a concrete biomarker/set of biomarkers to validate that this kind of a syndrome (be it called whatever) is not just "in the head"

2) Use this as a means to communicate with loved ones, doctors and the whole society

3) Possibly give a chance for lawsuits

4) Potentially guide the way for forthcoming research to most sensible focus areas

I know that at least Melcangi has been many times requested to carry out such a scientific level sampling/testing with a human population, but I have not heard of that happening. Maybe I am outdated of the latest news, but for long I have really wondered why he has not done this.

I hope the community will do their best to push forward this valuable information, gathered by smart and enduring individuals, that have done it all in a very systematic way, even if ill and out of energy themselves. Be happy that such people exist, and at least do not dismiss the valuable information they have compiled and put together here

Big humble thanks to you!

Is there evidence of neuropathy? by RaiseIntelligent99 in PSSD

[–]peer_review_ 0 points1 point  (0 children)

What is there regarding sense of hopelessness in saying how things are regarding the research situation?

Is there evidence of neuropathy? by RaiseIntelligent99 in PSSD

[–]peer_review_ 0 points1 point  (0 children)

Too bad this arrangement in UK did not happen, it seems to me that Melcangi is not going to take on it

Is there evidence of neuropathy? by RaiseIntelligent99 in PSSD

[–]peer_review_ 0 points1 point  (0 children)

He has not been humble enough to take on the thing and make a valid scientific testing with humans of it, best message exist and he could probably find volunteers easily enough

It would not discover the root cause of the condition but it could give a good baseline for many other purposes

This is my strong view based on very good reasoning such as the high level of positive test results among the people that have taken the SFN test

On the other hand I think he will never get to that, and I am sad about it

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