PSSD and Small Fibre Neuropathy Investigation Runs Into Problems

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March 8, 2023 | 33 Comments


  1. So the only sensible assesment ever so far collapsed. Great!

    This will never go anywhere, sorry for being honest.

    These syndromes are evidently some forms of neuropathy. A leg skin biopsy however is probably no guarantee to give a positive for sfn, since the damaged areas may be very localized.

    My prediction: there is no more useful information about this in next 10 or 20 years at the way things are going.

    Sad stuff, anyway thanks for trying.

    • i think you’re wrong
      we are on the right track and maybe able to do something about it if we are


      • At mimimum: contact ASAP that Finnish guy that talked about “36 cases” and ask say what he meant by it, or did you misinterpret something.

        I am afraid it was just the number of people in his pssd facebook group.

        He truly owes an explanation, thousands of people are following this now. Also since you sait things about that here, you have a responsibility to find out and clarify what actually was meant.

        So how many to his knowledge got the sfn biopsy and how many had positives.

        This is a big issue.

        • I think there is a very active Finnish group, some of whom have had biopsies. The only ones i know of have been positive. It is definitely possible that my post has been misread to suggest all 36 were positive. My understanding is the Finns are finding it almost as difficult as everyone else to get skin biopsies done


  2. If the SFN hypothesis happened to be a false lead, would it impact the work done by Luisa Guerrini? Or are those things completely different?

  3. People freaking out about 1 or 2 samples being in the normal range need to relax and stop misinterpreting this post. Sometimes samples from numerous areas, different labs, etc etc need to be taken especially in cases like this. Autoimmune SFN is the best lead we have and makes by far the most sense out of anything that’s been proposed by post drug communities. In fact, I had a doctor from Mayo Clinic who told me this diagnosis made the most sense. How far will doctors pursue this is up to debate especially with big money and big interests. But everyone relax we have a lot of people with unique autoantibodies and more than just one person with SFN diagnosis. This isn’t coincidence

    • Yes l agree, but the way everything is done is such a mess.

      Hopefully some sense gets into it.

      Btw, sfn or other neuropathies may be very local too and the leg biopsy may not reveal much. This is another challenge unfortunately.

  4. Hey Dr. Healy, one more thing to add…I had a doctor tell me one time his hypothesis is there are androgen receptor antibodies neutralizing the effects of androgens. No idea if this is another avenue to explore.

  5. Let’s hope a way around this setback can be found. Many people with PSSD, including myself, were really hoping the SFN testing would finally get the physical proof needed RE PSSD; and potentially reveal new possibilities and solutions for PSSD sufferers.

    We have come so far, there must be a way forward still.

  6. I think this research has a lot of sense… But…why only Focus on SFN?

    We could try as well to make autoimmune pannels to PSSD patients at the same time so we could be working un two different but possible relationed áreas!!!

  7. Additional Note March 10

    Another option that may be as good as skin biopsy tests done around the ankle – is Corneal Confocal Microscopy which has been mentioned in RxISK posts before.

    Some people have already had CCM tests and these have shown up as positive.  Anyone who has a positive test has a small fibre neuropathy.

    CCM abnormalities may also have some linkage to the many visual abnormalities that SSRIs and related drugs can cause.  These abnormalities often only show after treatment stops – so they overlap with PSSD – see Antidepressants and Vision Problems.

    See also Antidepressants Sex and Thermal Thresholds  for more about Quantitative Sensory Threshold Testing.   CCM and QST are likely as sensitive as SFN biopsies.

  8. Here is a further update. The Finnish group now has 73 members. This is not likely to be all PSSD suffererers in Finland but it is a significant number of people. Group may be the wrong word – coalition might be better. As with all other groups, including those who have reported to RxISK, people drop in an out. They report the problem but don’t let us know if their PSSD clears up. Some we know have committed suicide. It is highly likely more Finns than we know have had positive or negative results on SFN but not communicated this to others.

    There has been more than one report of a negative SFN test but as pointed out several posts back, when age and sex are taken into account seemingly negative results may actually point to a likely problem,

    Between antibody tests for possible auto-immune contributions, and ambiguous SFN results, the bottom line is that the PSSD community at present knows more about the underpinnings of their condition that any neurologist or other clinician. PSSDers know what the possible options are even if it is not clear which one is right. We need to keep pushing for neurologists and others to assist us in getting full work-ups and we do need a place to pool results – negative biopsies or antibody tests do not rule out SFN.

    There is unquestionably a genital neuropathy component to PSSD, Negative tests, designed for other neuropathies, do not rule this out. Its good to have a test to wave in front of a doctor or the media or the public but this distracts from an even more important issue which is Why Do You (the doctor or journalist) Not Believe Me.


    • It’s undeniable that we are going in the right direction. It looks like we have discovered more in the last 6 months than in the past 10 years.

      Do you expect that there are going to be updates regarding the research done by Luisa Guerrini in the coming months?

    • Dr Healey I am one of the few people with PSSD who didn’t get any genital numbness I got PSSD from vortioxitine I took it for 2 years because my psychiatrists didn’t believe me that vortioxitine causes sexual dysfunction they said it has no sexual side effects and my problems are psychological but after 2 years they finally agreed to take me off the medication but now I have pssd. I thought I would mention this that it’s possible to get PSSD without any numbness and I apologize if you already know this but online I don’t see many people saying that they have PSSD without numb genitals.

      • Mike

        Vortioxetine definitely causes PSSD and genital numbness PSSD. You absolutely are likely to have enduring sexual dysfunction and this might need a new name to differentiate it from PSSD


        • Thank You for the reply but can I ask if there is eventually a treatment for PSSD is it still possible it will help me even though I don’t have genital numbness? I have most of the other symptoms of PSSD anhedonia, premature ejaculation,ED,no libido etc

          • Mike

            If I knoew the answer to that we wouldn’t all be here. No one knows the answer – you, me ane everyone with genital numbness are all in the same boat. We have to wait and see but if one domino in this problems falls the rest will follow and it will be a time to celebrate


          • Thank You for the reply
            This is Kind of off topic but I live in Ireland and every psychiatrist I speak to are unwilling to learn about PSSD they didnt believe a me about Vorioxitine when I told them it caused sexual dysfunction it took 2 years for them to agree to take me off of the drug but now the damage is done. Thank You Dr Healy for the reply. I guess I should look on the bright side because PSSD is getting more media attention worldwide and more research is being done.

        • Can’t we just call the syndrome ‘Post pharmaceutical syndrome’? The non-sexual symptoms are currently ignored and are often the most debilitating – and the same syndrome can be caused by non-SSRI/SNRI drugs.

          • No we can’t. There may be a bunch of related problems here – some closely related others not. We need as pure a group as we can get and then hopefully something that reverses PSSD will also reverse the problems SSRIs and hopefully finasteride and isotretinoin cause but maybe not those caused by vaccines for instance


    • I’m late to this post, but … If it is a genital neuropathy, do you think it could be exacerbated by other things that can cause peripheral neuropathy, like vitamin B-12 deficiency? Or do you think it would likely be a separate process?

  9. Humanity will be paying a BIG PRICE from these Covid-19 vaccines, as we shall witness an increase in many health maladies. Small fiber neuropathy will be one of those relentless diseases that does not discriminate. If these MRNA jabs slowly eat away at the myelin sheath, there is no end to the destruction it will cause.


  10. Could someone post what is the normal small fiber density in ancle for different age groups? I guess Anne Louise Oaklander (University of Harvard) is the top researched on Small Fiber Neuropathy, so her research should have the most trustworthy figures. In Finland the range dates from the 1970’s and it leaves 80 % to the cases unfound.

  11. FYI, my family member who has PSSD experienced neuropathy symptoms after a bout of COVID earlier this year – pins and needles in the hands and feet. From what I understand, COVID (and the vaccines?) can cause a very similar syndrome to PSSD.

    • A

      Cell-trend check antibodies – these are not specific to SFN. At the moment we don’t know what it means if you have positive antibodies but negative biopsy – or vice versa.

      The antibodies are usually linked to an inflammatory process and we don’t know if SSRIs or isotretinoin or finasteride create an inflammatory process – in some but not others


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