Cheers buddy, thanks for your post
Means a lot, we must keep up the fight. Next up is big national TV show in the coming weeks, cant say anymore but watch this space as I continue to fight against Merck in raising our awareness campaign.
Thank you for doing this.
Please post what ever links you can to the tv show that you are speaking of
Never in my wildest dreams did I ever think this way of living was even possible!
I’m feel terrible today and for the past week
I feel totally out of it
Like I’m floating through the days
I feel like I’m living a constant out of body type feeling with no attachment to reality
I feel so weak, ill and just so down
Brain fogged and confused a lot
I can’t bear it !
This is just mere existing with no enjoyment in my life anymore
Nothing feels real anymore
Did you hear back from the study yet?
If there was no response theb be sure to let the Foundation know.
Yes Allen emailed me back today to say I can do all of the Brigham study except for the FMRI part because I’m on anti depressants
Me with John Santmann here in the Uk last week
I have another opportunity to generate awareness, involving the potential for yet more TV media coverage but this time, it could be MASSIVE. Stay tuned. No questions, just watch this space.
Members, friends and fellow followers… I wanted to declare this as my last ever post here on the forum
I’m sure some would have been left wondering where I disappeared to. Truth is, I got fed up with certain members on here, plus my father is not doing too well health wise.
When I crashed in April 2013, this place became a haven to me. I was probably self obsessed with this forum in the past as I tried to seek answers to my nightmare that is PFS
I really wanted to say thank you to those that have held out your hand in support, this goes for messages of support when I was suicidal, phone calls or PM messages
I want to say a special thanks to Mew for founding this forum, to AIRBOURNE, Second Amendment and Vincent for your phone/skype support when I needed it most and Scotsman, your a legend
More recently I have befriended my wife (McIbofh) and Depressed guy, you two are both key players, keep up the fight and you too Jorbie (Adam) as for you three we will maintain our contact away from here as we always have done!!!
Thanks to the foundation in particular to the Media man there, you know who you are!!! And to John Santmann for making the foundation, studies and my trip to Harvard even possible. So glad we had the chance to meet whilst you were over here in the Uk.
Christ knows along the way I’ve upset a few people too, to those of you in this category, no harm intended, it’s took me until now to find myself again. Finatruth, Notna and Nopecia in particular, I know your intentions are good.
On a positive note I’m back to about 80% mental capacity
Negatives are… Sexual function is 30% and physical health is about 50% now 19 months post Propecia
I still have no night time erections, shrunken penis, excess belly fat and breast tissue
My sleep has improved and only today I’ve dropped my dosage of antidepressant from 45mg to 30mg for 4 weeks before going to 15mg for 4 weeks before coming off Remeron totally!!!
What does the future hold you may ask…
Well… I intend to take a back seat with regards to my PFS and the work I’ve done for PFS and awareness including my TV interview and focus on been the best father that I can be. I am no longer wanting to kill myself and I do get small pleasures out of life again, making it worthy of still breathing in an out, which I never thought I would ever feel again.
For any member present, past or future that wants to contact me, you can reach my at my contact us page of my website here…
propeciasideeffects.co.uk/contact-us.html
Take care guys and I genuinely wish you all the best for the future… Over and out!!!
Great post! It’s absolutely essential to take a step back and stop obsessing with all tis. We defi itelt need to keep awareness of this condition going and that is why anti propecia sites and forums have been vital. They must continue. But constant obsessing with this illness has to stop especially as it has the power to dominate your life while solutions are sought. There isn’t one at the moment. So good luck in the future,keep up the good fight,and get on with your life.
Update prior to 2015
Improvements
Sleep - I can easily sleep for 10 hours solid without sleep aids
No more muscle twitches
No more shooting pains in the penis
No more desire to want to kill myself 24/7
Less feeling of been spaced out - not in touch with reality
Off all drugs now - no longer taking any anti depressants
Worsening
Penile shrinkage worsens by the week still
Numb genitals
Mild depression
Lack of any real hope
No morning , spontaneous , nocturnal erections
Zero sex drive
My Plan
Still remains… Live for another 2.5 years then end it all by the time I turn 40 if no improvements still seen
There is no way in hell could I see a future for myself like this, nor could I maintain a relationship like this either
My main problems are sexual that still haven’t improved or resolved
Paul,
you have got to ask yourself how anyone can take you seriously, when you just stated the complete opposite:
"Well… I intend to take a back seat with regards to my PFS and the work I’ve done for PFS and awareness including my TV interview and focus on been the best father that I can be. I am no longer wanting to kill myself and I do get small pleasures out of life again, making it worthy of still breathing in an out, which I never thought I would ever feel again. "
I find it irresponsible that you would kill yourself, when you have a baby child that needs you and that could give you much joy.
I am suffering from very similar side effects as you are including facial wasting, and I am much younger. I dont know if you realize this, but many 20 year olds on here have been fucked over much more badly than you have been. What should they think, when somebody who is comparatively “well off” kills himself? Should we all off ourselves in a mass suicide? Should all the young guys who suffer from zero libido and penile shrinkage kill themselves? Should awor stop working with the foundation and off himself in two years?
And you have the audacity to come on here and call your whining a “plan”.
Get a grip.
I am trying to get more people to sign up for the studies at Baylor and future studies. Also people should donate a part of their income. How can anyone get out of this dark hole and do these things, when we have people calling for suicide on this forum. Cant you carry out your plan without telling us this bs.
PVDL- you are a little German cockroach fuck! You have done shit for this site but disrupt peoples threads. He has participated in studies you little tiny fucker. You are a waste of space PVDL. You have single handedly ruined this site. And to honor you, you piece of shit, I am changing my company payroll deduction through the United way that was headed to PfS foundation to another cause. You are such a piece of crap.
Get a grip. Why do you insist on following me around this site?
Below is what the Baylor study is looking for. We already have a clue with a previous study that neurosteroid levels are a potential problem. Knowing what they are looking for should be a clue to us. What, if anything, can be done if they find these things to be true?
Research Goals
Current research is focused on determining underlying biologic mechanisms for the syndrome at a molecular level, as will future initiatives. Specifically:
Genetic risk factors for PFS
Androgen receptor expression in PFS patients
Hormonal profiles of PFS patients
Full genome gene expression profiles and pathway analysis in PFS patients
Proteins encoded by androgen responsive genes (ARGs)
Neurosteroid levels in PFS patients
Epigenetic chromatin alterations in PFS patients
It is impossible to predict what future medicine will or will not be capable of. If any poster on this board believes he can predict the exact outcome of this and future studies and or potential treatments or cures, he is delusional to the highest degree. Let me repeat: Thinking that with todays knowledge you can predict future PFS treatments is delusional to the highest degree.
It is very easy to predict however, that without studies, nothing will come about at all.
So if anybody thinks its clever, not to participate, they can either off themselves or accept their situation.
ok i’ll bite. you will probably end up calling me delusional or throw home brew somewhere
studies will bring about an official diagnosis which will be useful for legal reasons (lawsuits, insurance, disability etc)
as for cure, lets be realistic here.
even if they could patent the cure into a pill we would have to take everyday cause that’s how pharma works…
no company will make it because there’s no money in it
even if they could patent the cure into a one time injectable shot if that’s all we needed to reset our receptors…
no company will make it because there’s even less money in it
that means we will have to rely on existing medicine to treat out condition. unfortunately, effects of pfs can be progressive (aka rapid premature aging) for the worst affected. there’s no treatment for aging. well there is but we dont really respond to it (TRT+HGH).
existing medicine cannot treat tinnitus, peyronies, visual snow, skin thinning, shrinking dicks, muscular atrophy, etc. these conditions exist outside PFS and have been studied for decades.
so what does this mean? enroll in studies. then taper your expectations. no one here is speculating about anything. medicine is backed by greed and money and we’re billions short
You have no clue, what PFS is. Nobody knows what it is. Thus you cant make a prediction on possible treatments.
You have no clue, what future medicine will or will not be capable of. So I dont know how you can speak with such authority, on any of this.
All you are doing basically, is discouraging the participation in studies, as you insist that there is no cure ever. Thats very foolish behaviour, as these studies are your only hope.
i dont have a clue about PFS. no shit. no one does. i do know what observable effects PFS has done to my body. i do know my body has physically begun to age tremendously. do you realistically expect there to be a cure for aging?
im not discouraging being in studies. i will say that based on all the presently incurable conditions that PFS encompasses, dont expect a cure.
Lol. You have no clue, but know that PFS= aging. You also know that there cant be a cure.
To me you sound like another homebrew bullshitter, selling wild guesses as fact. The arrogance of some of you guys is astonishing.
You know what PFS is (aging), and that it cant be cured ever.
You ommit the fact, that there are recoveries, with lots of stuff reversing, including penile shrinkage, libido and brain fog.
If its “rapid aging”, do we all die younger?
How about you let the researchers do their work, instead of sabotaging your only hope to improve your condition.
I guess I shouldnt be surprised at your attempt to cast the studies in the most negative light possible. You are riding on the homebrew insanity carousel. Its so laughable, that you deride the studies and scientific researchers, while simultaneously taking guys like JQD seriously. It really shows that you are off the deep end.
Dont you see how absurd this text is. It reaks of emotional baggage, and makes no sense whatsoever.
- You diagnose the cause of our condition: rapid aging. Before that you say it has something to do with our receptors.
Question: How the fuck do you know what caused our condition?
- Then you say that a cure couldnt be financed? Why? If we win the lawsuit and continue to donate, the foundation could finance a cure as well. That would be non-profit.
Also, like you said, if we know the cause of our condition, loads of tools that are used for similar problems (and we dont know what problems are similar yet, because we dont know the cause), can be used.
- Then you revert back to saying there is no cure for rapid aging…
Look, you are way in over your head.
You have no idea what caused it, if its treatable, how it could be financed.
You are overestimating your own knowledge, competence and intelligence, and underestimating the progress medicine will make in the future.
Thats why you are a homebrewer. You think you will get a quick fix from some Messiah on here like JQD.