How long must we wait?


#21

Shooting in the dark, like everyone here…


#22

speak for yourself. im waiting on studies, so are others


#23

What makes you think it’s curable? Given the vast and diverse symptoms, it’s possible this disease is more like autism. Some things are just not curable.


#24

Every action has an equal opposite reaction. I don’t believe this is a life sentence for us, just probably it will take some time until they find a cure.


#25

I am waiting for it too mate. The thing is… I am not really optimistic about it. Hope I am wrong this time around!


#26

What cure is gonna bring back my genital tissue, plus my dry, thin skin, plus my numb genitals, plus my emotions and memory, and my sleep? Plus a bunch of other symptoms. Too much going on to think in terms of a single cure.
And how many neurological conditions are curable? Almost none. If you’re lucky you can treat the symptoms. But that doesn’t even seem possible in the majority of these PSSD/PFS/PAS cases. Probably cause our receptors are dead.
I think Dr. Goldstein was right when he said he doesn’t necessarily think the Baylor study will find a cure. They will probably find what we already know. That an epigenetic change has taken place. These studies are just trying to establish it as a condition not find a cure. Which likely doesn’t exist anyway


#27

thank you for your optimistic words… i think you forgot crisp , the gen scissor


#28

Agreed yet here we all are. If you don’t have any hope why do you look at this site everyday like the rest of us?


#29

The Brain happens to be one of the most plastic organs we have. People recover from strokes and structural damage to the brain. True, neurodegenerative conditions are typically not curable only manageable, but the brain can rewire itself.


#30

lol no one claimed the baylor study is going to find a cure. hopefully it will provide 1-2 levels deeper than what we already know. and if not, then at least we have a legitimate study to use to get more awareness and bigger funding.

if we had more funding we’d probably find therepeutic options and a cure a lot sooner. that’s why im waiting for the baylor study. would you not want most if not all of your symptoms alleviated with an ongoing treatment until a cure comes out?


#31

I remember CRISPR and think it could help. Unfortunately it isn’t nearly perfected yet especially not for use in the brain. It’s about 20-30 years away and I’m sure I’ll be long dead by then.


#32

I look because I have nothing else going on. I’ve been so completely lobotomized that I have nothing much else to do but check these internet sites. Sometimes I even forget what I just read. But I more look at it to remember that there are others suffering the same. But I no longer look here for treatment or cures cause there doesn’t seem to be any.
As far as the brain being plastic I agree. But I think that depends on the extent of the damage. This is a lot of damage and I don’t see much real recovery with time happening. I think a lot of times neuroplasticity just allows people to live with the damage done. People with strokes and stuff can relearn things but they are never really the same. Not to mention it can take many years for even the most minor improvement. I think Goldstein was honest when he said I would never be the same.
Also the problem may very well be that the receptors aren’t working which is a different and very complicated problem. Not to mention some of the physical damage does seems difficult if not impossible to fix.


#33

Absolutely and I’m lucky to be working with Dr. Goldstein to try and find a treatment. But I know he doesn’t hold the answers either. It’s a bit of a shot in the dark. But right now it is the only hope. And that’s the problem. It seems you either attempt some treatments that most likely won’t work and could make you worse or you learn to live with the damage. Not options to necessarily feel positive about.


#34

its funny how you guys like to be so doubtful about potential treatments

yet so blindly confident about saying “CRISPR will take 20 years”

stop projecting your fear on here dude


#35

Well what treatment should we be positive about? And saying gene therapy is far from being here is just reality.


#36

I could speculate that there seems to a correlation between androgen receptor cag lengths and side effects…It could be that certain individuals may have abnormal ranges in cag repeats determining sensitivity to androgen reduction and why they get obliterated upon return…


#37

ok. keep projecting


#38

That’s a bold statement for someone who isn’t in the field of neurology. He doesn’t even know what’s going on with you but he can tell you that? Seems pretty unprofessional if you ask me. “Hey I have no clue what’s wrong with you. Here are some drugs go try it, but I doubt you’ll ever be the same” doesn’t sound like his claim is backed by science. I wouldn’t lose all hope yet.


#39

Lowering expectations I guess? I dunno.


#40

i think this is 100% curable. i definitely was not born with it. it happened all in a matter of a day. one second i was fine. next i had symptoms that keep progressing in severity every time i raise circulating ligand. there’s a clear pattern.