How long must we wait?


#41

I also have a therapist who has her neurology degree and we discuss this all the time. The truth is some things will be lost. People who have strokes are never really the same. Many have complete personality changes afterward. It’s a matter of how much you can relearn and how severe the damage. And of course brain diseases like Dementia, Parkinson’s, or MS don’t get better naturally. This condition shares some things in common with those conditions. The truth is there aren’t many recovery stories from PFS/PSSD/PAS and it’s usually from a very mild form of the syndrome. Even most of them won’t say they are 100%.


#42

Projecting what? Facts. I think projection is saying this is curable. There are many posts from 2008 talking about in 10 years there will be a cure. Or how the Harvard study was gonna be a breakthrough. Now it’s been Baylor for 5 years. I understand the need for hope but my god it’s disheartening.


#43

you have 0 proof that CRISPR is 20 years away. if you did, youd post it


#44

I do have proof that it isn’t here today. There are also plenty of articles from scientists stating that it’s not perfected for use in most humans or approved for use in most diseases. It’s not being used very much at all period. It’s in it’s infancy.


#45

Let’s stop this arguing about CRISPR therapeutics being available in 20 years or next year, please. This is all speculation on both sides


#46

Never claimed when it would come out myself, unlike you


#47

We all hope it will be here and be helpful. I’ve just been completely zombiefied here and I don’t feel like I have, or want, much more time on this earth honestly.


#48

I’m zombie like too dude. Numb internally, can’t remember what it feels like to be normal. Stay strong tho


#49

when we can cure this mess , i think everybody here will come out 10 x times stronger than he was pre fin. so its even better as being yourself again. you will be a stronger self


#50

thats not quite true. within the last 2 years crispr became better and better. https://www.google.de/amp/s/singularityhub.com/2019/01/23/crispr-just-got-more-powerful-with-an-on-switch/amp/ highly doubt we need to wait 20 years. but first we need to know what happens with us, hopefully baylor can bring us closer to that.


#51

The participants in the Italian study were found to have pudental neuropathy, therefore even if the neurochemical / epigenetic change is corrected we’d probably still be left with non-working dick due to nerve damage.


#52

I was diagnosed with pudendal neuropathy as well.


#53

Just wanted to make a quick comment here; I have previously mentioned that when I am on magnesium supplements and then quit, penile sensitivity (and well, most other symptoms) subside and might more or less go away for some days. Today, I have reduced sensitivity on the penis and scrotum but if there was neuropathy involved, wouldn’t it be completely permanent? I am speaking only for myself of course. Shortly after quitting fin I had periods of raging libido and sensitivity so this might suggest that this is a degenerative disorder in my case. I just hope I can reverse it somehow.


#54

sage is gonna be super interesting as we all know allo is huge if what we speculate is true. Baylor… no idea and if I was a betting man my money would be on never gonna be released, but allo is real and is here so let’s be hopeful. My libido is still shot but my mentality has cleared and I know there has to be an answer


#55

Guys I know this is tough and when i have good days it makes me feel like pfs can be reversed or at least a return to 70 or 80%. Let’s not give up hope.


#56

i just cant study. its so ridiculous. ive lost my mind and concentration


#57

I went to a urologist in 2017 who knows Dr. Mohit Khera personally. He sent an e-mail to Dr. Khera who said that the Baylor study was going to be released early 2018… I no longer believe that it’ll be released without bias and in a form that’ll be of benefit to us, if it ever gets released that is. Milano is currently investigating gut bacteria, which probably is a total waste of time and resources as well.


#58

I remember this…That tells you somebody was full of shit…


#59

and yet Awor who is directly in contact with the Baylor guys said in 2017 that it would be released end of 2018-early 2019.

i trust awor’s info more


#60

problem is pharma is too big and have so much power. people are not important for them, only money. you can see it everywhere. merck has made much more bad drugs that have way more sides than benefits (vioxx, fosamax, gardasil) , yet fda still trust them and help them that they can sell new drugs. i have more believe in milano than baylor. because they publish things. probably because they are located in europe