One of our regular contributors from Finland noted that it is great to have research on prokineticin and p63 etc but that we need to remember the bigger picture – that PSSD and related conditions involve a sensory neuropathy. We need to locate where in the sensory system the problem lies.
It turns out there is a very active Finnish PSSD support group of 36 people, almost all of whom are also in an Antidepressant Withdrawal group of nearly 2000 people. Almost everyone with PSSD and many with withdrawal but no PSSD have a proposed or diagnosed small fiber neuropathy + clear signs of dysautonomia. They are liaising closely with a Professor of Neurology Mr. Seppo Soinila.
Below I mention QST tests which they find has not been helpful at finding results. Some with negative QST results have positive biopsy findings. The biopsy regularly confirm a Small Fiber Neuropathy – these are usually taken from the leg. According to the laboratory of the Helsinki University Hospital the normal value for intra-epidermal nerve fibre endings is >1/mm. But for a 30-year-old male for instance the averige is 10.6/mm and should always be more than 8/mm. Many in group have densities ranging from 0.8 to 4. It’s important that both the patients and clinicians are aware of international normatives concerning to intraepidermal densities and that the age must be taken into consideration. PSSD people with autonomic problems have gotten autonomic tests done with abnormal results. Also an EKG Holter (24h) easily finds abnormalities from heart rate variation, also in my case.
Neuropathy means damage to nerves. Sensory means the sensory rather than the motor system is damaged. The damage may be anywhere from the skin, where many sensory receptors are located, to the sensory areas of the brain.
In the case of PSSD, there are a lot of pointers to sensory receptors in the skin. The effects of antidepressants go beyond skin to gut and balance, and there are a host of sensory receptors in gut and joints and muscle that play key roles in helping us function and seem to be impaired in enduring withdrawal syndromes.
There are several RxISK posts about this such as PSSD, Withdrawal and Small Fibre Neuropathy and Sex and Thermal Thresholds. Small-fibre, or sensory, neuropathy problems may be playing a part in the visual difficulties reported by RxISK, which are also common in people with PSSD and who are in protracted withdrawal.
In line with the role of antidepressants perhaps having anti-Covid actions, there is an extraordinary site React19.org that lists a lot of small fibre neuropathy problems following both Covid and its vaccines, including a post-vaccine sexual dysfunction (PVSD) that looks like PSSD – see Welcome to Mondor. React19 also has a list of tests that have proven useful to demonstrate the existence of these problems. React19 is a treasure trove of information for anyone interested to chase sensory neuropathies further .
The RxISK posts above mention quantitative sensory testing (QST). A few years ago this was the test most likely to demonstrate that a person who claims to have PSSD does indeed have something physically wrong with them.
It has been difficult to get QSTs done. They are simple and inexpensive, but neurologists have viewed them as subjective up until this – and a biopsy will look more objective to many people.
RxISK ran a Special Medical Operation tackling a French company who have a machine that could be easily adapted to do QSTs – but they have so far refused to engage. Perhaps it’s time to re-lobby them – camp outside their offices or whatever.
React19.org has details of many more tests that might be pertinent – even though Covid and its vaccines risk complicating the picture.
It also appears that several people with PSSD have elevations of anti-fibroblast antibodies (FGFR-3) – see FGFR3 article.
Pinpointing the location of the sensory or small fibre neuropathy might allow us to try treatments. Just this week (mid-September 2022), there was great excitement in response to reports that Car-T treatments might help SLE and other auto-immune conditions.
There is a $100,000 Prize for any doctors who try this out in PSSD and find it works.
We need you
So we need you to alert neurologists to the Prize and to get them testing you and others with ideally with biopsies but also with QST and antibody tests.
We need reports back of tests that appear to have shown a difference, which we will list here – along with reports that the tests may not have worked for others.
Consider raising PSSD etc with any medical clinic who are using Car-T therapies.
Let us know about any insights you gain from chasing small fibre and sensory neuropathy issues.