What’s peoples thoughts on this. Robin was found with 40% less dopamine neurons. Do you think that’s what fin does kills the neurons. If that’s the case then I have no chance of recovery because when there dead there dead. No return. What does everyone think
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Only research can shed some light into these speculations. I do believe in this, and dopamine is just a tiny part of what has been affected in our bodies. The whole picture is unfathomable.
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I think finding ways to say that you’re screwed is probably not the best use of your time.
As has been said many times, the short lived recoveries that some people have experienced indicate that the symptoms can be overturned.
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Will research shed any light though. Looking at posts here research has been ongoing for over a decade and no much has come from it. Plus mainstream science has been studying neurological issues for decades and not much has come from it. We don’t even have the machinery to see what’s in the brain. I don’t mean to be a downer but I don’t want to sugar things either. I’d love to be wrong
I really don’t want to be thinking I’m doomed for life. I’ve believed in neuroplasticity and that’s gave me hope to carry on but I don’t want to feed myself bullshit and have false hope. Neurological issues parkinsons, Ms, fnd, tbi etc etc they only get managed and not recovered and this is another Neurological issue. I really want to be wrong
Well, here’s what I see:
A famous actor kills themselves. And the assumption is that because he had a hair transplant he had PFS. Here’s an extract from an article where one of Williams’s co-stars talks about Williams’s depression:
"Fresh off winning the Academy Award in 1998 for his performance in “Good Will Hunting,” Robin Williams had reached a new apex of his career. He enjoyed respect as an artist, was a top box-office draw in and appeared to be happily married to his second wife and loved being the father of three children.
Yet, he appeared to actor star Sam Neill, Williams’ then co-star in the 1999 film “Bicentennial Man,” to be “inconsolably solitary and deeply depressed.”
“He had fame, he was rich, people loved him, great kids — the world was his oyster,” Neil has written in his new memoir, “Did I Ever Tell You This?” According to the Daily Mail, Neill also wrote, “And yet I felt more sorry for him than I can express. He was the loneliest man on a lonely planet.”
Williams died by suicide in August 2014 at age 63 in his home in Marin County. He had been struggling with depression and anxiety following a diagnosis of Parkinson’s disease. But after Williams’ death, it was learned that he had been suffering with Lewy body dementia, a progressive disease that causes a decline in mental abilities and mobility. Williams’ widow, his third wife Susan Schneider Williams, referred to the disease as “the terrorist” inside his brain and said it had worsened before his death to include memory loss, paranoia and delusions.
Years before his death and throughout his adult life, Williams had publicly struggled with mental health issues and addiction. Neill said he observed some aspects of Williams’ struggles when they worked together on “Bicentennial Man,” a science-fiction comedy-drama in which Williams played an android who goes to work as a housekeeper for a family headed by Neill."
So, while we might like to point out that Williams had anxiety and insomnia problems, which are common on this forum, he also had problems with depression for his whole adult life - surely before he may or may not have been exposed to hair loss medications. In addition, he had been diagnosed with a couple of serious health conditions. At some point you might ask if a lifetime of depression might trigger a suicide. Or if someone who has been depressed their whole life might be pushed over the edge by a serious diagnosis like Parkinson’s.
…Or should you assume that the health condition you don’t know if he has or not is the culprit. Williams’ family seem to be relatively open to talking about his health. Why would they talk about his depression, his Parkinson’s diagnosis and his Lewy Body Dementia (first I’ve heard of that one, I think) but not his PFS if that was the final straw?
My take is that Robin Williams, sadly, was depressed for most of his life and towards the end of his life he developed and was diagnosed with a condition that impaired his quality of life and then a further diagnosis was made leading him to question his quality of life going forward. That feels like an explanation that makes sense to me. It’s one that works without PFS. we don’t know he had PFS. Why are we insisting that PFS define his death when it’s the thing we have the least evidence of?
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Thank you @Greek your views are always appreciated.
Id like to add Finasteride was mentioned in his Autopsy.i also read that hed told his wife that he thought the medication was effecting him but both her and his Dr re assured him that it wasnt the drug. This is what prompted me to try to reach out to her.
In his last appearance he looked like he’d rapidly aged, lost his masculinity and muscle density, something some of us recognise from our own experiences you can also see the haunted pfs look in his face. He was clearly a very androgenic guy most of his life.
I’m sure its something that can be debated for ever and a day. In most case the finger is pointed at other things. For me Drs tried to pin everything on the rheumatoid for years and even had me questioning my own sanity that was until i discovered PH. Sadly RW never fully made the connection because he had underlying issues and regardless he isn’t around to say either way. My own A I disorder put me off the scen too.
Many who already suffer from anxiety, depression etc say its nothing compared to pfs… I think it was the same for him.
For me he had pfs and it took him into a whole new level of suffering which tipped him over the edge. God rest his soul.
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I agree. I read through the post you put about his wife talking about him at the end. He was diagnosed with lewy body which symptoms overlap with pfs. My thinking is the dots weren’t made. He didn’t even know about pfs. We don’t know if pfs, pssd, ant med damage isn’t the same mechanism as early dementia. Seems noone recovers same as dementia
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Thanks for your input @LazarusRy, I either forgot or didn’t know about the presence of finasteride on his autopsy report.
But, let’s still look at this with a bit of caution. We still don’t know if Robin Williams had PFS. If he did, we don’t know if he was severely affected. He also had a couple of other significant diagnoses to contend with. He also had a lifetime of depression, which we can assume he dealt with pre finastrride.
I don’t think it’s a sensible message to put out - that PFS killed a beloved star, when his decision could easily be leveled at another, confirmed, diagnosis. How do we know that a lifetime of depression + PFS pushed him over the edge, when it could also be a lifetime of depression + a Parkinson’s diagnosis? Or was it just a bout of deep depression? Depressed people kill themselves without the need for another contributing factor.
But in addition, the message to PFS patients shouldn’t be “you’ve got this, there’s no comeback, looks at this guy who might have had PFS too.” Especially when the years that this website has been up and running tells us that plenty of people DO feel better with time. I’m not trying to deny anyone’s experience, nor am I trying to sugar coat anything. But, if we don’t know the whole truth, is taking the worst possible spin the best way to interpret the story? If so, we’ll have more needless suicides on our hands.
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@Greek you could be right and then again so could I. Everythibg you say is valid.
What upsets me greatly is the lack of acknowledgement of what this drug is doing to people and the injustice served against the innocent lives lost which makes me feel the need to speak out. The lad we lost from Wales stated the drug killed him yet his father said it was the depression from losing his hair. Its beyond… like being called a liar. My passion and fight lies in awareness to get this gaslighting behaviour changed and overturned. ( I mean in general by the outside world, not here).
Back in subject RWs wife described his symptoms and she was talking pfs which is a lot more than depression… terrible insomnia, living in fear, terrible social anxiety, unable to think straight, paranoia, loss of interest in her, physical changes…
If RW did have it and he found PH he may not have gone down the path he did. I know for myself by 2017 things were so bad and I was at the point of no return with no answers to this increasing deterioration. but then I found PH with that I had knowledge so in effect it saved me from potentially the same fate.
A significant number of drugs can increase the risk of dementia hence the epidemmic we are seeing. So its not just finasteride that could have given him Lewys.
I agree some do recover with time and that’s great, even amazing, something to hang onto I think I would have been one of them if it wasn’t for the repeat exposure. There lies the distinction between those that do and those that don’'t but its not always that black and white. However those that generally get worse are the ones that had repeat exposure to these drugs.
We’ve seen accounts of some spontaneously recovering after a decade which I’m always keen to point out. I’m not one that paints dark pictures I even try to use my time in this as proof to others that you can survive it no matter how bad while we wait for a cure.
We can’t say just sit and wait it out and you will get better if that’s what we portray no one will take us seriously they’ll just fob us off with dig deep mate one day you’ll be OK… (I know you’re not saying that but people on the outside would jump on it leading to more gaslighting)
Supporting the community by giving them hope in the science, supported by regular updates, and engagement is what would help keep people in this world especially the ones who are in a very bad state and they are out there.
Suicide is s route that no one should ever take. There have been too many needless lives lost. By giving people some hope they have a reason to stay. This site should bring this to people Even a monthly brief update checking in on the community would go along way.
As an aside you have my utmost respect @Greek
Kindest
Laz
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io sto convincendomi che non esistono malattie immaginarie la medicina è un pò come la matematica ogni malattia ha una sua causa ed effetto. I problemi di atrofia e movimento degli arti con annessa debolezza hanno per forza una spiegazione scientifica (malattia neurodegenerativa o muscolare tipo patologia dei mitocondri o altro). Non è possibile bollare ogni sintomo come PFS solamente perchè eravamo sani. I ragazzi di 20 anni sicuramente sono un fenomeno particolare ma le persone di 46 anni come me possono nella vita contrarre malattie varie e non per questo posso pensare che derivi dalla PFS. scusa se non traduco in inglese ma non so come fare in ogni caso il sito ha un traduttore. Domani farò una EMG perchè temo di avere la SLA.
Great post laz.
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Thanks my friend
Do we want to scare the crap out of people? I think it’s important to convey the message that when you take fin you risk the absolute worst that PFS can throw at you, a condition arguably worse than death. Personally I think that should be the takeaway for people who come here not yet afflicted. Not ‘if you get sides you’ll get better’, who’s that gonna dissuade. Save the reassurance for their member story.
On the other hand we could use the numbers.
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Where are those stories of people getting better. I can’t find any. My theory is peoples mood etc can get better once they learn to accept it. I’m unsure of the actual symptoms of pfs. I’d love to be wrong though
There are some/many studies that relate FNS with neurosteroids problems, including dopamine, gaba and serotonin.
This is a real poison that I cannot understand how is still sell. We live surrounded by political corruption.
I have still a lot of problems and my life is very difficult, but I am much much better that when I left finasteride 1.5 years ago…
I haven’t left so far the hope to recover…
My little brother here under is a total disaster and I have many neuromuscular problems but I focus in my children and family.
Brain can recover… let’s have hope
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Glad to hear your getting better.
Can I ask what symptoms have improved for you and what’s worse?
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Ciao legalmust. Strange we all were fine till beginning with this poison and after taking we have all similar very strange and unusual effects.
I was fine and after beginning picking up the poison I was very nervous and my hands and finger were very rigid with a strong pain on my fingers and rigid muscles everywhere. Eventually spams came and my penis that was happy all my life disappeared.
Noone change like this in some months just because you are 45.
And like you I made a EMG because the doctor thought I could have SLA or MS.
Why so many coincidences?
I didn’t leave the poison sooner cause the doctor insisted there were not relationships with finasteride as she has made a huge business with finasteride for the last 20 years. Do you think she doesn’t know about PFS? She knows but she doesn’t mind. She’s covered by her assurance as finasteride is a legal drug.
My penis is a total disaster. Just incredible, I can believe it.
I had a lot of neurological and neuromuscular problems that are still there but I have improved quite much. I was so bad that I was thinking in suicide. I couldn’t sleep because the spasm my hands and finger were trembling (still but much less) my hands arms lags were moving alone when I was sleeping.
It is incredible what this legal poison do just for make more rich those monsters of Merk
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si anche io ho sperimentato movimenti incontrollati e fascicolazioni improvvise sono passate 9 settimane dall’assunzione e questo aspetto sembra migliorare. ho pensato anche io al suicidio ho avuto insonnia per tanti giorni. i dolori alle gambe e la debolezza sono sempre presenti fluttuano di intensità nell’arco delle giornate. il mio pene sta migliorando stranamente da qualche giorno riesco ad avere erezioni ed a mantenerle per qualche secondo. lo sperma non è bianco e denso ma giallino e acquoso. quanto tempo hai impiegato per migliorare dai problemi neuromuscolari??