Can somebody please tell me what the hypothesis is? I dont see why that should be a problem.
Are you still thinking some sort of epigenetic change to the androgen receptor? Or neurosteroids, or what?
Im about to start a new round of seeing doctors - I plan on pushing for tests to see if I have antibodies directed against the enzymes or hormones effected by finasteride, or even against the androgen receptor itself (all of which is possible by the way).
Am I wasting my time? If you have a good idea about whats happened I want to know because I can then direct my own doctors to the right areas.
Thanks again for your efforts awor. If we want to do epigenetic testing for the next phase, it is commercially available here: epigendx.com/methylation.html
A) Practicing doctors are people who have been trained to diagnose known medical problems with patients and apply known medical solutions.
B) Scientists are people who have been trained to discover things, which have never been discovered before.
If we would have a category A) problem, we wouldn’t all be sitting here. Unfortunately, our problem is neither understood nor do we have a known solution for it. All practicing doctors can do is to multiply existing medical knowledge (often in the form of commercialized, pharmaceutical products). In our case, there is nothing to multiply. We first must go through the scientific discovery process, in order to precisely characterize this problem. This is what we are currently working on with now 5 medical research institutions.
If you are hoping that you can tell your doctor to do a few tests, and that by this you can understand this problem, then yes - you are wasting your time (and money). Rather, put your money aside - because the time might come when we will need it.
Please hang in there and be patient. I know this syndrome is VERY taxing on all of us. It’s sh**, and there is no nice way to put it. Nonetheless, we must take the time it takes to do the basic research. Unfortunately, none of this research is going to happen in a doctors practice. A practicing doctor (as opposed to a scientist), does not have the cutting edge molecular biology knowledge, nor does he have access to the necessary lab resources, nor does he have the time to perform the required research.
Disclaimer: I am NOT advising you to generally not see any doctors. I am only suggesting that you stay realistic about what you and your doctor can accomplish in your 15 mins. patient time.
“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.” - Dale Carnegie
“It’s very difficult to understand this group of symptoms and what is causing them. When we tested hormones, on the contrary of that which I would have expected, the testosterone levels were in range. However, there is a difference that is statistically significant regarding a hormonal hypothesis that we are looking at. There’s a molecular signal that reveals that these subjects [PFS sufferers] are different from normal people, and from hypogonadal individuals.”
I’m checking if its even possible to obtain the footage. The video is only available to people in Italy, and also need to verify some things with those involved with the research.
