What year did you go see him ?
Well of course it would be experiemental, you see him quite a while back, at the beggining everybody would try this and that, its with time you understand the subject, at the time years ago when you went to him he could just started treating PFS, how do you know now that his or his daughters direction in treatment is the same than you were with him before ? Even one year in medical field, many things can develop or have a new approach.
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The problem with testosterone is you feel good at the beggining then you crash, and the reason is because you havent supplement the upstream hormones, because your tell your body no testosterone has to be made now, but also your hormones precursing testosterone take a huge dive, therefore making you feel like shit after a while on it
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I doubt visiting this doctor will do anything but drain your wallet but there was something interesting that I read in that article:
āIn comparing PFS patients symptoms with those of veterans and civilians who sustained a traumatic brain injury, their complaints were nearly identical and when you compare the results of their laboratory bio-marker panel of neurosteroids and neuroactive steroids, their deficits (insufficiencies and deficiencies) were identical.ā
Is that true? Same lab bio-marker panel of neurosteroids? If thatās true thatās kind of a big deal isnāt it? PTSD and TBIs have been studied for years and there is treatment for these conditions
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What gives you that doubt ?
Just doubt based on my own experience over the last decade. Lost of money spent but not much progress made
Have you had first hand experience with Dr Gordon ?
As the expression goes, āTo a man with a hammer, everything looks like a nail.ā
Gordon works with TBI patients - thatās his shtick. Just because they have a similar presentation does not mean PFS suffers have TBI.
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On my brain scan both demyelination and lesions were found this is the sign of brain damage. This drug destroys the brain and causes atrophy.
Yes but when you have similar bio markers which are showing up similar to TBI patients, thats a very good track to go on, as my friend like it or not but I believe we have a chemical induced form of TBI no matter how you slice it or dice it.
Have you got another doctor who is doing much better with his patients, or there just doctors also with big hammers ?
Thatās far from a given.
I donāt know how any doctors are doing with their patients but over the decades of forum posts I have failed to see any evidence of successes outweighing failures from any of them.
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Hi @Ronnie99
If you havenāt already, I would encourage you to check out the recent results from Baylorās study, which demonstrated gene dysregulation in PFS patient tissue they studied. Although patients share some overlap in symptoms with TBI patients, gene dysregulation and TBI are not the same thing. TBI would also not explain many of the physical symptoms which PFS patients experience, such as Peyronieās, penile shrinkage, bone and joint problems, gum recession, muscle wasting, digestive problems, testicular atrophy, genital pain, etc.
Please note I have also made a slight edit of your post from making a declarative statement to one which uses the phrase āI believeā before sharing your belief on what PFS may or may not be. As there has been so little research, and as a result, understanding of the disease, we ask patients to refrain from making declarative statements about what PFS is or treatments patients must try. Of course, you are free to share your experiences and beliefs.
Take care.
Interesting
When I was a kid I had a bad knock to the head, a very ball fall and literally smashed my head on a wet floor.
every 1 of 2 human had an accident with his headā¦I think it is not the reasonā¦I go to make the rain dance, long time no rain hereā¦
Just to chime in here, I actually genuinely got a TBI (suburdal hematoma with skull fracture) when I was 16. They had to do a craniotomy.
Took me 3 months to recover. Had to spend time in cognitive rehab but I made a āfull recovery.ā
That being said I did develop erectile dysfunction when I was 26 out of the blue. Later on, May 10th 2024, I got hit with pfs after switching from a Minox/fin combo pill to just straight fin after getting sides from the minox. There was a two week hiatus where I didnāt take anything
I woke up and it felt like my brain was being scrambled, panick attack, penis shriveled up before my eyes, and then two days of brain fog that subsided. Had some serious anhedonia for a bit but now my only symptom is my flaccid, shriveled penis. Pisses me off. Iāve already lived with having ED for 8 years and just resigned to taking Viagra 15 min before sex
I checked my T levels and they were close to 500 TT but Free T was borderline low. It was ā9ā but I forget the units.
Im gonna wait a bit and then I might try proviron since my free t is borderline low. My SBHG levels are normal. Iām just scared to scramble my hormonal profile, androgen receptors, ect even more. It seems like thatās what this drug did.
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Iāve read a lot of posts in places like the TBI subreddit on peoples experiences with TBIās and there can be crossover symptoms though this isnāt surprising. When you damage the brain physically whether it be from a blow to the head or an infection a lot of bizarre things can happen with signalling pathways, neurotransmitters, and hormones. The brain can be damaged in many ways and I donāt rule out genetic factors changing in PFS/PSS/PSSD/ect- being literally damaging due to forced regulation literally harming it physically if altered in certain ways. People who get relief from things people with TBIās get in this context isnāt surprising either. What Iāve noticed personally in my own case is that thingsin my brain seemed to have been stuck in the opposite direction from signal perpetuation, things simply stopped at many layers of functioning in many body systems. With a TBI things will trend in that direction too. If the right signalling networks are knocked offline you will get ED or severe anhedonia, that doesnāt mean just cause something caused a symptom that we got stuck with doesnāt mean curing it will all around be the same unless you zoom out to an overall concept like ārestore signalling and signalling perpetuation to systemā which isnāt too helpful and just states the obvious.
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Gordon is nothing but a rip offā¦5k for nothing all these Drās are legal robbers when they can do absolutely nothing for youā¦saw my old urologist last week and just the vist and worthless labs was 700 bucks totalā¦Just to sit there and get laughed at to my face by some clueless shit headā¦
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Exactly 1000ās upon 1000ās of dollars when it comes to the bloated medical industry especially from what Iām seeing when it comes to funding studies is absurdly high. It in reality doesnāt cost that much to get people together, give them some chemicals, and get read outs or whatever they are planning to do. There is nothing about a group of people consuming substance A and substance B in various conditions and analyzing the results costing 1000ās of dollars. To take you blood and look at it in the case of getting a lab done costs as much as the electricity used to power the machine and the cost of the single needle used for your blood. Iāll never get over how corrupt it is.
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