So he did a long fast, then did several steroid cycles!
CDNuts would be proud.
Yep! PFS is notoriously awful/incurable/untreatable and recovery is unlikely(?). (Recovery stats are hard to research).
BUT I’m “here” to promise you I HAVE naturally recovered from numerous traumatic PFS maladies. I just naturally recovered! Hopefully YOU will too.
See my previous threads for more details:
I’m not special or significant. I am and was unusually fit. But I just can’t explain my recovery.
I took FIN daily 2014-19:
Completely healed/resolved during 2014-19, now just fading traumatic memories:
-Zero emotions - 6 months
-Zero sleep - 6 months (but sleep dysfunction resumed after 1.5 years on risparidone/nortryptyline
-Body feminization- 4 months
-Zero sexual erections - 2.5 years
-Zero libido - 2 years
-Penile pain - 2 months
-Brain fog/unreality - 6 months
-Crippling vertigo - 1.5 years
-Severe double vision - 1.5 years
-Hallucinations- 2 months
Lingering/improving maladies:
-Sleep dysfunction- sleep 4 hours with Belsomra but feel perfectly normal despite limited sleep
Non PFS issues:
-Vocal dysfunction - converse normally but voice unlovely/unnatural/halting
-Motion dysfunction- feel “drunk” and unbalanced when in motion
Good luck!
Mel H., Washington DC 51yo
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Look! Another one who recovered, wait…
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Omg 
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Please ban this troll this is ridiculous at this point.
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@anonymous1968, 2 of your recent topics have been merged into your member story.
Please use this topic to discuss your experience with dealing with PFS and your natural recovery in the future, rather than spamming seemingly pointless new topics about it.
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Not a typical thread! But 1000% accurate and - hopefully! - inspires YOU to “keep calm and carry on” through extremely traumatic PFS and possibly recover!
I’ll try to be succinct. I am a 51yo atty in Washington DC. I took 1.25 mg FIN religiously daily from 1999-2014…
THE GOOD
In Dec 2014 I quit FIN and a few days later “worst-case scenario PFS” plagued me for 2.5 years. I am extremely fortunate I ENTIRELY naturally recovered as follows:
- total loss of emotions - 6 months
- body feminization- several months
- total loss of libido - 2 years
- total shutdown of sexual plumbing - 2.5 years
Since June 2017, PFS has been a fading traumatic memory…
THE BAD
Now this is quirky - and disturbing! PFS was so horrifying that I incessantly was suicidal. I attempted very serious suicide FOUR TIMES.
I will skip details except one. I mistakenly believed I could “starve myself to death” in two weeks. However it took 4.5 months and I was hauled off to hospital at last minute. This unfortunately triggered ataxia, which still plagues me but is mostly resolved naturally. Since it’s not relevant to PFS, I won’t detail.
THE UGLY
This is a bit confusing but important. Entirely separate from PFS, taking FIN 15 years obliterated my ability to sleep beginning June 2014! Even more confusing, I DON’T NEED TO SLEEP!
Yes, that is utterly impossible. Except it’s not. I primarily take short “rest naps” and function and feel fine! I sometimes take Belsomra and get a few hours of unconscious sleep and also feel and function fine! Impossible, right? Nope.
Two full-time sleep docs are unable to assess me because my sleep dysfunction is unprecedented!
Last, I CANNOT SUE MERCK because my sleep dysfunction is impossible, unique, and - weirdly- doesn’t “harm” me in any manner a jury could assess!
PFS COUNSELING
Now my story is unique but YOU should contact Phillip Roberts to arrange critical counseling to help YOU weather the PFS storm.
Also try anti-depressants and sleeping pills.
Hang in there and good luck!
OMITTED
For brevity I’ve omitted countless wild/disturbing details that are not germane to my points. Police broke into my apartment, crazy weeks at hospitals, hallucinations, etc. Best forgotten…
PS
Mel H., me last month in DC
Interesting story. Some people have noted improvements during fasting. Where in the timeline did you try to starve yourself to death for 4.5 months?
‘‘Also try anti-depressants and sleeping pills’’… hanging would be faster you know.
Please bann this spamming troll, credibility goes waay down when bots like this take over.
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Why do you describe ataxia and insomnia as being separate entities from PFS?
Lots of people throwing shit at this guy but can’t be arsed to do the survey.
I really can’t take any single one of you people seriously to be honest.
Take a genuine look in the mirror before you call someone else a troll or a bot.
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Agreed! Thanks for making this call out.
He needs to submit his sleep record to the Guinness World Records.
It would gain traction. Some guy on 11 days holds the record currently.
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Moderators and readers, I am posting this SOLELY to (1) convince YOU to believe that “natural PFS recovery” is indeed possible & (2) dissuade you from committing suicide! (Yikes!).
See my prior threads for more details on my recovery and PFS advice. I have absolutely positively naturally recovered from “worst case scenario PFS” (except profound sleep dysfunction). I recommend YOU get counseling from other PFS victims (call Phillip Roberts at 856-425-6046 to arrange counseling)
- take sleeping pills & anti-depressants
- avoid worthless alternative medicine quackery
- not discuss PFS with anyone except medical professionals
- try to act normally and enjoy life until you - hopefully- partially or fully recover like me.
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ah ok
Would be great if you took the legal fight to Merck on behalf of everyone on here. You’d go down in history for the right reasons.
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I’m a 53yo lawyer in Denver, took Fin religiously 1999-2014, preserved hair but in 2014 directly/indirectly triggered “demonically horrific” swarm of THIRTEEN maladies - inc. 100% sexual/emotional/sleep dysfunction, body feminization, hallucinations, raccoon eyes, double vision etc. See my prior posts.
I am extremely fortunate I am now 85% permanently healed, only tolerable but vexing sleep dysfunction and ataxia (atypical Fin issue).
Unfortunately I am a medical mystery. Near-starvation possibly resolved many PFS maladies but triggered horrible ataxia, so I don’t recommend it except as last resort.
I do advise YOU to “hang in there” as long as possible bc YOU may naturally recover or may learn to endure PFS. As far as I know sleeping pills, anti-depressants, and psychological counseling are only PFS treatments.
PFSFoundation.org reports some similar recoveries:
Q7: Are there any cases of PFS patients who’ve gotten 100% better?
There are no known scientific reports of PFS patients returning to full health. But a handful of PFS patients have reported to us that they’ve felt 80%, 90% or even 99% better over a period of one to five years. Other patients report that they become more stable and learn to better cope with the condition over a period of one to three years, rather than return to full health. Unfortunately, a small minority of patients report increasing severity of symptoms over time, especially with respect to some of the psychological side effects.
Finally, I advise you to sue Merck WITHIN TWO YEARS or your suit will be dismissed as untimely. (I sued in Jan 2021, much too late, unfortunately.) Don’t settle for peanuts, as almost all US plaintiffs did.
Good luck,
Mel H.
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Hey Mel,
I really believe that it was the methylprednisolone that cured you. Myself and many other noticed improvements or temporary recoveries with corticosteroids. Unfortunately I don’t know how to convince a doctor to give me the treatment that you had.
How were you able to get into the Mayo Clinic? I was denied when I requested an appointment.
Thanks
I had all my symptoms completely cured after an ACTH stimulation test where they injected me with synthetic ACTH, which is a glucocorticoid. After that I was completely cured of all my symptoms for about 8 days or so. I then experienced a very sudden crash during a period of sexual arousal. So something happened to my androgen receptors that triggered a crash. I had the ACTH test done again 2 years after and did not experience the same temporary recovery which left me very confused but seems like a lot of people with PFS can have a temporary recovery once and not experience it again. Maybe it has something to do with the gene expression side.
I’ve been interested in trying methylprednisolone because of anonymous1968’s recovery as well as my own experience with them. Also, glucocorticoids we’re studied to reverse methylation https://pubmed.ncbi.nlm.nih.gov/11296230/
The dosage that Anonymous1968 was much much higher than yours. He was given 1g per day intravenously so it was much more potent.
Even with my improvements and anonymous’ story, I still don’t know if it would help us and am afraid of trying it because of the risks you mentioned. It seems promising but also scary.
I meant the dosage of methylprednisolone that he took. It would make a difference. The typical methylprednisolone pills are only 4mg a piece while he received 1g per day over 5 days. Also it was given intravenously rather than orally.
When it comes to 5AR inhibitors, I also took saw palmetto both topically and orally and that is what caused me to crash.
I did not have any improvements after the ACTH temporary recovery. It was more like before I was in a terrible state, then during the temporary recovery everything was cured and I was alive again, then I crashed again and was back to the same terrible state if not even slightly worse. All mental and sexual symptoms were cured during that time. Libido, erections, mood, sleep, skin and hair texture, etc all were back to my normal self.