Okay, I too, have not made the distinction between permanence and incurability but thanks for mentioning this boston as it makes the whole pill of “permanent” easier to swallow. It makes most sense for the great majority of us here but you’re right, the tag of permanence doesn’t in and of itself necessarily mean that we can’t be cured.
How does one know if they are cured from PFS?
Perhaps a person can suffer from PFS, get cured from PFS; but still be left with serious health problems.
What is the test, how does someone posting on this forum know if they are already cured?
(ps. Dr Irwig ignored half the symptoms).
i dunno, if there was some natural recoveries we dont know if is permanent for all
when research determines which r the signs of permanent condition we could state that
since now we see only symptoms
Don’t what to tell you. Irwig, whose creditials are beyond what any of us here have, who conducted a scientific study on that question and continues to work on other PFS projects thinks it’s permanent, some guys on the forum think it’s not. I suppose people can draw their own conclusions from that. As of yet there is zero evidence of any recoveries other than the recoveries the vast majority of people experience after discontinuation of the medication. Of course those guys never had PFS.
yes it seems to be permanent. If body can not recover own it’s on (I mean there is no bacteria or virus involved) then nothing can help us at the moment. After all medicines create a conducive environment, it is body which pulls itself out of the mess.
If there is no improvement after 3, 5 or 10 years chances are the remaining years of our life will not cause any changes as well. But on the other hand miracles do happen, so I am living in the hope of miracles now.
I don’t think any of us know whether it’s treatable or not… but it’s permanent without question. Have hope for sure because you should but we’ll also need to keep contacting FDA and their counterparts around the world, participating with the media and researchers, etc. I don’t think there’s any question BP and SA have helped the research momentum through their participation with the media and really that’s what this is all about.
everything is permanent until you find a way to treat it … but i have to agree that as things currently stand and what we do know, this condition is very much permanent
stay strong and dont lose hope, keep fighting merck and demand the fda do its job for a change
My wife left me too because of no sex life. She took away my only son along with her and now I don’t have the guts to try another marriage because I know it will fail miserably because my state is same as it was. Thanks to fin.
Sad but true. It is permanent.
@LazarusRy You did not lost your son, it’s still your son. Appreciate the time with him, enjoy it and be the best father you can be. I dreamt always to be a father but it is really hard with PFS. The best you can do is to be there for him.
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All of us are almost in the same boat. Some are experiencing little less trouble and some are going through the worst nightmare. For me I am experiencing all sort of physical and mental issues including no natural erection, even with interventions the erection is not hard enough, minimal ejaculation(with no semen), soft like cotton gonads, weak muscles, weak bones, anxiety, memory loss, etc.
The worst nightmare for me is the thought that what if my male child inherits the 5 alpha reductase deficiency and struggles for no mistake on his part as this is a condition people are born with and it is due to inheritance.
@kill-fin I had my son 12 years into Pfs I’d been suffering total loss of libido for a decade and had teaticular cancer prior to him being brought into this world via IVF . He is fit, healthy and in great shape. If someone wants a child there is no reason why they should let PFS stand in their way. There is little evidence of epigenetic changes being passed on and no one has reported any such instances. Saying that I would have thought about it twice if I’d known about Pfs at the time. It’s a difficult one.
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Thanks for the optimism. Its just that the effects of this drug has made me so depressed that only negative thoughts cross my mind. Moreover I have lost faith in the entire medical fraternity (rather to say industry) as it is only money driven and there is concern for human welfare. The medical industry is world’s biggest industry and no less cruel than the arms industry.
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@kill-fin you’re bang on there mate. The drop in neurosreriods and hormonal imbalance dictates our emotional state and this tells the story in how we think. Unfortunately it’s chemical and unless these change which they do for some the negative loop has us by the balls . I’ve tried every strategy to break it. People suffering from episodes of trauma generally get better with these but for us it’s like giving a pair of trainers to someone with no legs. The problem needs to be fixed. When I used to get the odd rebalance I’d be walking on air with the effects of mindfulness, meditation etc.
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抱歉，我想再确认一下，你们的孩子真的没有受到影响吗？我只想知道这是不是又一次赌博？
因为我看到axolo的一篇文章说到了表观遗传的跨代影响，但生活总要有个支撑。
Very healthy so far
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