Thank you @Greek and @Rb26dett
I understand that we might not be able to detect PFS, per se, using available lab testing methods. This is especially difficult because there’s no consensus on the underlying mechanism of PFS. For all we know, we may be looking 5 different manifestations of the disease across all the members and PFS sufferers out there.
However, we know that despite the underlying medicine, we have a set of comprehensive set of symptoms people are suffering from. And AT THE VERY LEAST, a handful of these cascading symptoms of the underlying mechanism should be detectable and verifiable by existing lab testing mechanisms?
Are we aware of any other diseases that have such debilitating effects as PFS, but not any correlating lab work?
For example, something like Cystic Fibrosis, although hard to detect, can be established through a certain collection of symptoms that are observable in lab work, even if the underlying genetic expression is not confirmed through DNA testing. And it is my understanding that until recent medicines that came out that could target the underlying genetic malfunction, the treatment was focused on mitigating the observable side effects of the disease by supplementing with mucus-clearing agents, pancreatic enzymes, and so forth.
Similarly, for something like Ulcerative Colitis and other autoimmune diseases, we don’t fully understand what causes the immune system to go haywire and attack healthy systems in the body. However, we can observe the cascading effects of the abnormal autoimmune response through bloodwork like inflammation markers and the existence of other outwardly noticeable in thsymptoms like joint pain and mouth ulcers. And the treatment is geared at either modifying/dialing back the autoimmune response, or protecting the affected systems from the attack. This is paired with further supplementation through iron anb other substances to offset the malabsorption effects like anemia.
For example, I’m diagnosed with colitis. And considering how common digestive/gut problems are here, it’s highly likely that it is related to my usage of finasteride. So, in essence I am treating my colitis which is a subset of my PFS condition. I can improve my quality of life through this method, even if the underlying mechanism of are not directly resolved. I may have to take immunosuppressants and iron supplements for years until there’s a better understanding/treatment for the underlying mechanisms of colitis & PFS.
Things like anemia might be more obvious and detectable, as blood count is one of the first things doctors check for. However, I may have never made the connection with the anemia to depleted iron levels in my blood, if I weren’t persistent enough and asked for more testing to be done. Similarly, I was having digestive issues and yellow stools. And this was dismissed as a byproduct of my colitis. But I persisted and had a pancreatic enzyme testing to be conducted in my stool. It indeed turns out my pancreatic enzymes are low, and now I have an avenue for treatment, and further investigation to improve my symptoms abdf overall health.
My point is we may have other symptoms that can be treated at a surface/symptom level as well. It may be a matter of having a deeper understanding of the observable markers most related to that subsystem.
For example, achieving some balance of the sexual hormonal levels in the blood might not relieve neurological or sexual symptoms. But this doesn’t mean other lab testing is not potentially useful. I reckon back to the “neurobiological” recovery of @thisisarealbummer. He was able get CSF testing done and confirm deficiencies in different neurosteroids. to This is most likely a cascading effect of finasteride usage, and whatever supplementation he is using is not addressing the underlying mechanism. However, it’s very valuable that he is able to find reprieve from his symptoms, even if it’s by addressing it at a symptomatic level. He has labwork to prove his deficiencies prior to supplementing. And if he can show an improvement in the deficiencies through his supplementation, this could be a potential treatment method for many people who are suffering from similar neurological sides.
And if we pair this with a more comprehensive lab work including his other markers (blood levels, sexual hormone levels, organ function, thyroid levels), and not just the neurological ones, we can begin to develop different models of how PFS is affecting us differently, even if it’s on a more surface level. And we can also develop more efficient methods of supplementation, instead of everyone randomly trying out supplements without any understanding of how it’s manipulating the various levers in their body.
I’m imagining something likthe survey, in tandem with the genetic profiling through 23andMe which is already occurring, plus a comprehensive holistic lab work.