I think have ALS

General Discussion
#63

@Papasmurf I think of you. You are a very severe Case. We both lost stunning girlfriends, our entire live and now we are hanging down in bed, confused what happened to us. Im not really bedbound, I can go outside, but there ist no more fun in doing anything. So we all in this community can only tell us day in day out, we are not allone with this ugly new reallity.

And we the still midsevere cases can look at the worst cases and pray that we can go outsite, looking for ourself but we have no fun in doing that.

And the mild cases with only sexuall Problems they are unlucky with their ED, never having wild and animalic Sex anymore.

So it is a very sad story for all of us.

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#64

@Papasmurf We are all with u brother, please try to stay as strong as possible. I have always thought about us committing mass suicides out of merck headquarters is the only thing people might take us seriously.

#65

Suicide with a firearm in some States of America no problem, no pain. Suicide in other countries, you have to jump off a hightower, jump into a train, all very very hardcore …

#66

People will take us seriously once the evidence mounts and patients make their voices heard. It’s just a matter of time. One scientists we are talking to, a leading figure in his field, is completely dumbfounded by our situation. He was not aware of our condition (which shows how much awareness work we still have to do) and has branded the lack of understanding of this condition and the often abysmal treatment of patients (including ridicule, an unfounded psychiatric diagnosis) as medieval-like.

Our condition is likely very rare, it is highly variable, its persistence is unusual and it is probably rooted in epigenetic changes, which have only recently (in science terms, where things move slowly) gotten more attention. It’s just a very odd condition and hence hard to reconcile with mainstream understanding of disease and drug reactions. That’s not going to change, because a bunch of guys kill themselves for attention. It will just reinforce that this is a “mental” illness, a delusion.

The good news is, whenever we talk to people with relevant expertise who are at the edge for current science, they quickly understand and realize what a tragedy this is. We had another scientist who was surprised that a powerful endocrine disruptor like Finasteride was even on the market for a cosmetic condition. But the common problem is lack of awareness and a shortage of high quality evidence. That’s what we have to work on and that’s what the staff is working on.

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#67

@Northern_Star well said, thanks for your efforts and very good positive points.

#68

Dam…

So that’s two who came down with Parkinson’s that we are aware of.

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#69

And R Williams who turned out to be misdiagnosed

#70

“Our condition is likely very rare, it is highly variable, its persistence is unusual and it is probably rooted in epigenetic changes, which have only recently (in science terms, where things move slowly) gotten more attention.” @Northern_Star

That means no chance for a sudden treatment, all the hormon supplements after all useless. Will See the next weeks.

So we fight like Mitch said for the acceptability of our stigmatizing Syndrom (chem castrated) to live better with. Not hidding behind anonymity anymore.

And there ist the Hope that Scientists get interested in this epigenetic alteration, to understand whats going on.

So trying to trigger a receptor Location microelecrical Like a peacemaker is just a funny thought. Maybe something creazy will help us.

#71

Many get temporary recoveries from hormones, supps or foods whether it lasts weeks, days or hours. That certainly tells me ithis is reversible.

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#72

Well said @Northern_Star. Sorry to hear you’re going through this @Papasmurf, this disease is truly cruel. I hope you experience some improvement soon, that’s fucking horrifying.

So we fight like Mitch said for the acceptability of our stigmatizing Syndrom (chem castrated) to live better with. Not hidding behind anonymity anymore.

Yep. I know everyone has their reasons, but imagine if every single person on this forum spoke publicly about their condition. It wouldn’t be stigmatised, because the world would learn we’re not a bunch of hypochondriacs, we’re not suffering from a delusional disorder and we’re not psychosomatic. The PFS Network podcast has begun recording and we have 8 guests lined up, but I’d love more people to interview. It’s a simple and controllable action that puts us on the right path.

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#73

I’m not familiar with R Williams . So he got PFS and they actually misdiagnosed him with Parkinson’s and then later changed their mind ?

#74

If we could have people stop complaining about certain symptoms that make us sound like hypochondriacs I think that would have helped us over the years

One guy on another forum I’m on recently was saying he’s ok but he just gets “weird mouth movements” when he talks. I mean put your self in the shoes of the average doctor. How would you take this ? We got into a big argument over it because it pisses me off. That type of stuff distracts from a large amount of people who were actually really hurt over this and experience some pretty nasty things. And it ruins all of our credibility.

Also other complaints that in my experience doctors ignore and pass off as just not significant are complaints related to genitalia or gonad shrinkage. Would not even bother complaining about that because if it falls in the realm of average size then it’s irrelevant to doctors and not evidence of being harmed by the drug.

The severe constipation that herniates a disk, the severe insomnia and ED. The solid things that they can’t ignore. The other thing is to never say anything about how you feel mentally because it’s opens up other explanations. I think a lot of this has to do with presentation to your doctor .

I “got” a gastroenterologist a couple of weeks ago. I was just scheduling a routine colonoscopy. But first I told her why I had a colonoscopy 5 years ago that found a pre cancerous polyp which generally speaking requires a routine colonoscopy every five years as screening which is just normal stuff. I told her that my constipation was so bad that the straining caused a herniated disk in my l4/l5 disk. So I needed a colonoscopy to rule out a blockage. Of course her immediate reaction was “how did you get that constipated”. So then I said well I was being treated for prostate enlargement and took dutasteride which I think caused neurological damage followed by taking Saw P which caused more damage followed by taking Saw P which caused even more damage. The point is that by the second time I took Saw P I literally could no longer digest food. Then I told her what increasing serotonin does as far as temporarily brining my digestion back to normal and about how I think a 5AR inhibitors impact on Allopregnanolone and other neurosteriods lowered my serotonin. By the end of the conversation she said “I would never give you a 5AR inhibitor”. She believed me . But the presentation was perfect. Years ago I got a urologist to say the same thing to me that he would never give me a 5AR inhibitor. It’s almost like you have to prepare for the doctors appointment and know exactly what you are going to say. In my experience complaining about your symptoms in vivid detail for 5 min and then bringing up how it all started after taking a 5AR inhibitor is the way to go. But you can’t complain about petty things either or even things that just sound petty to another person. I have convinced a couple of doctors over the years. I’m going to bank on that the average PFS victim has not

So that’s 50 percent of it . Getting a doc to believe you on a personal level. The other 50 percent of it is simply a massive cover up to protect asses. Simply covering it up is getting harder though.

#75

@5-alpha-victim sorry, Robin Williams the great late actor

#76

Did robin Williams take fin ?

#77

Robin Williams took Fin and before his death he was diagnosed with Parknson’s but latern on (can’t remember if pre or post mortem) docs changed the diagnosis in Lewy bodies dementia.

We can’t tell for sure if Williams had developed PFS or was experiencing Fin sides, but if I’m not wrong (please, check what I’m saying because I’m not sure), the autopsy found traces of Finasteride, suggesting that he was taking the drug since a long time.

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#78

I believe he was on it for years you can tell via the change in his hair line and coverage. He complained of many Pfs like symptoms in the years running up to the end. In his last interview you can visibly see the changes some of us are familiar with. Much thinner body, smaller jaw, thinner neck, dramatic ageing, He looked so old suddenly, he was a very naturally looking masculine guy.

#79

Wow

Did not know about the possible fin connection with robin Williams or about the Parkinson’s diagnosis and its subsequent retraction

#80

I only talk about severe sufferers like me. At the end we are the ones who commit suicide. Even within this forum itself a guy questioned me saying “pfs is only about sexual symptoms, the physical symptoms u mention must be something other”, so there’s no more hope left.

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#81

Crazy
Guess I have been living under a rock doing my urine neurotransmitter stuff

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#82

Man the whole forum is littered with biases of any kind.

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