This is very interesting and I’m sure mirrors what some of us are going through even down to the arm shake. It’s worth noting he denied hallucinations and reacted negatively to meds. It’s quite plausible that fin destroyed the neurons rather than a particularly agressiive type of Lewys. I unsuccessfully tried to find a contact mail to plant the seed with Mrs Williams. She would be perfect in raising PFS profile and seems very passionate. This could be an opportunity for us any thoughts? Could the foundation not make contact with her?
Holy hell, Robin actually could have had PFS and they dont even know it. You are right that Mrs Williams should definitely need to be contacted about this and this would also raise our profile as you mentioned.
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Was Robin Williams for sure on Finasteride?
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Quick Googling and one link here where it was mentioned, Im sure theres more -> https://radaronline.com/exclusives/2014/11/robin-williams-coroners-report-death-suicide/
”Investigators found that he had been prescribed a variety of drugs, including lansoprazole, rapaflo, finasteride, amoxicillin, quetiapine, carbidopa, and mirtazapine. Toxicology reports showed he had mirtazapine, desmethylmirtazapine, caffeine, and theobromine in his blood at the time of his death, but no alcohol.”
-> thats some PFS friendly cocktail and that nicely summaries the western medicine horror…
I think Mrs Williams could confirm for sure…
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He was losing his hair years ago then had a full head so I’d say he definitely did. I’ve also seen it mentioned before that he took it. Getting a route into Mrs W is key. One look at the forum and she’d be convinced this is what destroyed him. Like many of us they were looking in the wrong places and getting misdiagnosed by doctors. .
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I hear ya …the only trouble is I feel she is convinced it is this Lewis disease either way , it might be a tall order to try and convince her it was a disease that most doctors say does not exist .
The insomnia he had sounds pretty ferocious, it even affected her at one point as I guess she was kept up by him?
It looks like his brain fog must have been savage too as he couldn’t memorize 1 line in his last film .
I have read other people on here suggest that robin Williams, Heath ledger and Michael Jackson all had PFS and didn’t know it
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@Forwardsnotbackwards it’s documented in the link from @Finfina that he was on fin. It took me 18 years to find the cause. Having rheumatoid put me off the scent and having depression likely did the same for Robin Williams. You can bet he had more symptoms than those listed. it’s definitely worth making contact. This could blow the lid on this. I’d want the truth if it was me.
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You could try to contact Susan trough the neurology.org pages? There is a feedback and comment form. Ask if Susan wants to contact you, that you suspect that you could have some more personal knowledge about this condition. And as you said, one look from Susan to PH forum and I guess the light would be on.
Actually these pages could be your way to contact her -> https://www.americanbrainfoundation.org/leadership/susan-schneider-williams/
Theres a contact form to the foundation.
-> https://www.americanbrainfoundation.org/contact/
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Did you try to meesage her/them about this?
Ok good job. Now we just wait if she connects the dots or not.
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I haven’t floated fin yet Ive kept it brief asking her to contact me as a fellow sufferer of the dramatic onset of the same symptom list at too young of an age for it to be dimentia. I’ll update
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@AaronF @Forwardsnotbackwards @Finfina @devils342 @Dubya_ Got a reply and was pointed to areas of help for Lewys and the trailor for the upcoming RW documentary. Basically it hasn’t gone to his wife. I’ve responded by sighting fin as the cause and asked it to be shown to her and let her make the decision as to whether she wants dialogue in understanding what predisposed him to Lewys. I mentioned many young men who’ve taken fin can’t get diagnosed and also fear they have developed Alzheimer’s etc. I fear this will go down a hole. I’ll let you know if I get a reply.
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Ah shame hopefully she’s able to know I assume since she has celebrity it will be harder to contact but don’t give up it would be amazing if she saw the information on the PFS website as well.
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I hear ya @LazarusRy I think that was the point I was trying to make on my earlier post - she is convinced its Lewys and that’s what she is investing her time and heart into , it’s gonna be tough trying to show an a different variable that contributed to her husbands downfall but at the same you have gotta try , gotta be in it to win it 
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After reading the editorial it seems plausible to me that he had PFS, who knows if we will ever know the truth. Rest in peace Robin.
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Thanks for putting forth this effort @LazarusRy.
In the end, if she has closed her mind to the possibility of his suffering PFS, there’s no point in aggressively pursuing the matter further. If she starts looking into the condition after you planted the seed, perhaps some day things will start clicking about certain symptoms he may have had.
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I read the article, what got my attention was the constant high cortisol, do pfs people have high cortisol? Mine after accutane is always on the low side.