PSSD and Small Fibre Neuropathy Investigation Runs Into Problems
In October 2022, we ran a blog post called “PSSD Patients Needed for Small Fibre Neuropathy Investigation”. It’s worth reading to get some background on the situation before continuing with this post.
We had connected with a neurology department in Sheffield, UK, with the aim of recruiting several patients with post-SSRI sexual dysfunction (PSSD) who could be tested for small fibre neuropathy (SFN) with a skin biopsy. If the investigation was successful, we were going to write up the results for publication in a medical journal.
Since running the blog post, we have been liaising with several PSSD sufferers who contacted us to apply for the testing. Unfortunately, some problems have occurred that may stop the study going ahead.
Trying to persuade GPs to arrange investigations into PSSD can be very challenging, and this adds to an already difficult situation for sufferers. The original plan was for Professor Healy to make the referrals, thereby removing the need to have any interaction with a GP. However, after starting to recruit patients, we were told that GP referrals would be required. This delayed the project, but several patients have now managed to get referred.
We’ve been told that several other people with PSSD attempted to circumvent the process that we had set up, and tried to persuade the neurologist involved to accept them by contacting him directly and pleading their case. This wasn’t helpful and it caused some unnecessary friction in the process. There were limited places available and we wanted to make sure that those taking part were the most suitable and didn’t have anything in their medical history or clinical presentation that could potentially undermine the results. The work being done was ultimately for the benefit of all PSSD sufferers, not just those being referred.
We hoped that the testing would have been done by now, but we’ve now been informed that the neurology department is waiting for permission from the hospital management to accept referrals for patients who don’t fit the standard picture of small fibre neuropathy – in other words the PSSD patients. We were not aware of this, and it may mean that the testing can’t go ahead.
Ideas?
Given the problems with Sheffield, we think that another NHS hospital will have the same restrictions, so there seems little point in switching to a different NHS hospital.
Another idea might be to find somewhere that can carry out the testing privately, but this is likely to be very expensive. Even if we could use money from the PSSD Research Fund, the cost may be prohibitive.
Getting a lot of individual results from different places might not be useful either, as different clinics likely to things slightly differently. Ideally we need everyone to go to the same place.
If you can find anywhere or anyone who might be able to carry out skin biopsies for small fibre neuropathy, please let us know and we’ll try to contact them. We’ll need their email address.
One positive – one negative
Some further news is that we’ve had results from two people with PSSD who recently had a skin biopsy for SFN.
The first case was negative ie. epidermal nerve fibre density was within the normal range for the person’s age. This person’s case is very convincing for PSSD, so it’s difficult to know what this means and how it fits into the overall picture given that so many of the Finnish PSSD group reported abnormal results. Epidermal nerve fibre densities can vary in different people, so it’s difficult to draw any firm conclusions without more data.
The second person had nerve conduction tests. This type of testing was mentioned in the original blog post linked above. It predominantly assesses large nerve fibres which are used in motor function and isn’t really suitable for investigating small fibre neuropathy. However, the neurologist noted that while the motor function results were normal, a sensory abnormality was found. The person is going to be referred for more testing which may include skin biopsy.
We’ll continue to keep you updated, so please stay tuned to the blog.
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.
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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
D
At mimimum: contact ASAP that Finnish guy that talked about “36 cases” and ask him.to 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
D
A group at Cambridge University research CADASIL and perform skin biopsies as part of that.
They may be too associated with the local NHS hospital but it’s possible.
info@cambridgestroke.com
thanks very much for this
will chase this and other leads
D
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?
No it wouldn’t. They are completely independent
D
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.
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.
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.
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!!!
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.
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.
D
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?
Hopefully – yes
D
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.
CHANGE OF DIET + TRYING TO ELIMINATE STESS = BETTER CHANCES OF SURVIVAL
https://disfunzionisessualipostssri.blogspot.com/2023/03/pssd-biopsia-cutanea-neuropatia-piccole-fibre.html
Article can be translated to English.
Italian researcher who acknowledges pssd is asking people suffering with pssd to make an appointment with him to test sfn with skin biopsy.
A French documentary about problems with antidepressants has recently come out, and in it, there is a short section on PSSD.
The PSSD network has taken a clip from the documentary, on
the section about PSSD, and have put English subtitles in.
https://www.pssdnetwork.org/pssd-news/allo-docteurs-antidepressants-useful-or-dangerous
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.