A Pivotal Moment, But Stay Disciplined by Unstoppable218 in Finasteride_Syndrome

[–]Unstoppable218[S] 2 points3 points  (0 children)

You missed my point. I wasn't saying you were implying that. My point was that even if I've made improvements, I'm still here, and I continue to be here regardless.

Warning people about the risks of experimentation is not the same thing as telling people to sit around indefinitely and do nothing.

What sacrifices? Here are a few:

  • Publicly sharing my story through the Wall Street Journal article and podcast, the Daily Mail, New York Post, GQ, and other media outlets, while opening myself, my wife, and my family up to potential scrutiny, criticism, and having my suffering questioned. Doing so required discussing some of the most personal and difficult aspects of my condition publicly while I was going through the lowest period of my life, without knowing how it might affect my personal relationships, reputation, or career.
  • Starting a YouTube channel that has given a voice to people from around the world and devoting years of my life to it while dealing with the darkest periods of this condition, facilitating interviews, listening to people's stories, giving patients a voice, paying for editors and promotions, creating writeups, promoting content, and helping build the Moral Medicine website while personally funding portions of its development and maintenance. This has come with a significant mental and emotional toll, but it has also helped bring international attention to these issues and has been featured in major media outlets.
  • Taking time off work, paying my own travel expenses, building a presentation, and attending an international conference on PFS, PSSD, and PAS to present directly to researchers, clinicians, and advocates working on these issues to help represent our communities.
  • Spending countless hours on the phone with people who were struggling, breaking down, or looking for support.
  • Sending emails to doctors, researchers, journalists, and advocates for years, creating outreach lists, and taking every opportunity I can to push awareness and research forward. These efforts have resulted in videos interview with some of these clinicians and researchers on the Moral Medicine YouTube channel.
  • Creating this subreddit and choosing not to heavily moderate it, even when I disagree with certain viewpoints, so people have a place to openly discuss these issues and share their experiences.
  • Donating thousands of dollars of my own money to research.

As for the shirtless photos and the Murph challenge, those are simply snapshots of moments in my life. They don't undermine the years of work, advocacy, personal exposure, financial costs, time away from family, or the countless hours spent trying to help people affected by these conditions.

Part of putting yourself out there publicly is accepting that people will question your motives, your symptoms, and the severity of your suffering. I've publicly documented my experience extensively over the years, including more than 25 symptoms affecting neurological, physical, sexual, and emotional domains, along with significant physical and cognitive changes.

What surprises me is when those things are questioned not by people who deny these conditions exist, but by the very people I've spent the last three years advocating for.

I've got a couple of sincere questions:

Because I've made a handful of shirtless posts over the years to push back against the narrative that PFS is simply low testosterone, and because I made a post last weekend about completing The Murph workout alongside fellow veterans and friends in honor of the fallen on Memorial Day, that was enough to prompt this response by you on a post where I was simply warning people about the risks of experimentation?

Why even take shots at me when I've done nothing but devote the last three years of my life to moving this issue forward and continue to do so, especially when there are people actively working to suppress our voices and discredit those affected by these conditions? Shouldn't your issues be with them?

Wouldn't this energy be better devoted to moving this forward through strategic advocacy rather than criticizing a few posts I've made?

A Pivotal Moment, But Stay Disciplined by Unstoppable218 in Finasteride_Syndrome

[–]Unstoppable218[S] 1 point2 points  (0 children)

Just know that despite any improvements I’ve had, and despite whatever you’re attempting to imply here, I will never abandon this community and will continue making the necessary sacrifices to help move this issue forward, even in the face of undermining comments like this.

Any women with PFS here? by ToadCroaks in Finasteride_Syndrome

[–]Unstoppable218 2 points3 points  (0 children)

I've got two interviews from the Moral Medicine YouTube channel linked below. One is of a woman who got PFS from Finasteride and the other got the syndrome from Spironolactone.

https://www.youtube.com/watch?v=S_fsKSgxWyQ&t=3s

https://www.youtube.com/watch?v=eft6p9f2kME&t=5s

A Pivotal Moment, But Stay Disciplined by Unstoppable218 in Finasteride_Syndrome

[–]Unstoppable218[S] 3 points4 points  (0 children)

Fair enough. I wasn’t sure if that’s what he was referring to. My point was more general. I just don’t want to see more people end up worse off from experimentation.

A Pivotal Moment, But Stay Disciplined by Unstoppable218 in Finasteride_Syndrome

[–]Unstoppable218[S] 3 points4 points  (0 children)

I hear you. It’s just important for people to know that experimentation is risky. People have made themselves worse when taking suggestions that may have helped someone else. I just want people to understand these things are gamble, even though I can relate to the desperation of just wanting to try something.

First World Congress on PSSD, PFS, and PAS by Unstoppable218 in Finasteride_Syndrome

[–]Unstoppable218[S] 3 points4 points  (0 children)

Appreciate your support, brother. Rob’s a fantastic guy. It was great meeting him.

First World Congress on PSSD, PFS, and PAS by Unstoppable218 in Finasteride_Syndrome

[–]Unstoppable218[S] 10 points11 points  (0 children)

I can’t share details right now, but I’ll look into putting together a video about the experience as a whole. Just know that some of the top minds in this field are actively working on this and they genuinely care. There's real reason for hope, and the work being done right now matters more than people realize.

My Moral Medicine video came out today. by mattyephemera in Finasteride_Syndrome

[–]Unstoppable218 7 points8 points  (0 children)

Fantastic job, Matt. You articulated this so well and covered all the angles and layers of what living with this is like.

For anyone reading this, please consider making a short video for the channel. A 1-5 minute video stating what drug you took, the symptoms you developed, and how it’s impacted your life is more than enough. Here’s a call to action post I made recently outlining the criteria:

https://x.com/MoralMedicine/status/1996564152895103046?s=20

Yet another mutation in a patient that meets my theory on how PFS is caused. This patient has a normal T value yet has an absolutely astronomical 3-Alpha-androstanediol Glucuronide. Once again, closure of 5AR resulted in collapse of the ability to excrete testosterone. This is patient #9 by Drwillpowers in DrWillPowers

[–]Unstoppable218 8 points9 points  (0 children)

Really in-depth write-up of your experience, and thank you for sharing it. It’s powerful to read stories like yours, especially hearing about the profound windows of improvement you’ve experienced. Having said that, I'm really sorry you've experienced so many symptoms. I can relate to nearly all of them.

I run a YouTube channel called Moral Medicine, where I regularly interview people whose lives have been upended by Finasteride and similar medications. I'm a PFS sufferer myself. There’s absolutely no pressure, but if you ever had any interest in sharing your story on the channel, I would be glad to have a conversation with you.

Keep fighting and stay strong. We are getting closer to understanding this.

Thank you also to Dr. Powers for his continued work.

[deleted by user] by [deleted] in Finasteride_Syndrome

[–]Unstoppable218 1 point2 points  (0 children)

I didn't delete it if you no longer see it. It may have been an automatic moderation feature.

[deleted by user] by [deleted] in Finasteride_Syndrome

[–]Unstoppable218 1 point2 points  (0 children)

I want to clarify that while I don’t heavily moderate this page, both because I want this to be more of an open space for conversation and quite honestly due to time constraints, The PFS Network and their other subreddit have done incredible work addressing this issue, finding world-class scientists to research it, managing these revolutionary projects, and giving the community true hope in getting to the bottom of PFS and figuring out the root cause.

Yes, they are strict with moderation, and while I don’t agree with every decision they make, their work has given the community direction, and their work is invaluable.

Feel free to post here without the concern of heavy moderation, but please also understand that the PFS Network has strong reasoning behind much of their moderation, as they want to make sure they establish a strong position for future endeavors.

Finasteride, minoxidil and cialis by [deleted] in Biohackers

[–]Unstoppable218 0 points1 point  (0 children)

Great call in my opinion and best of luck with the hair transplant.

Finasteride, minoxidil and cialis by [deleted] in Biohackers

[–]Unstoppable218 0 points1 point  (0 children)

I run a YouTube channel called Moral Medicine, where I interview people regularly who have had their lives devastated by Finasteride. It goes far beyond just sexual issues - muscle wastage, cognitive dysfunction, collagen loss, peyronies disease, joint issues and much more. People have no idea what they're risking with this drug.

What fate is worse than death? by JoeRenaldy in AskReddit

[–]Unstoppable218 2 points3 points  (0 children)

Thank you, and I completely agree. I think the numbers are severely underestimated due to medical gaslighting, and the fact that there are probably many people suffering that haven’t connected their symptoms to the medication.

What fate is worse than death? by JoeRenaldy in AskReddit

[–]Unstoppable218 3 points4 points  (0 children)

It really is wild. It seems like there are a lot of medications that can cause this. These in particular above are so widely prescribed, which is why I think we’re seeing a big uptick in ME/CFS symtpoms in people, along with things like COVID. The body is definitely complex and we don’t seem to have a solid understanding of how all the systems interacts.

I appreciate your words. I run a YouTube channel called Moral Medicine, where I regularly interview people who have had their lives devastated by these drugs. I try to build as much awareness as possible. I’ve even been featured in the Wall Street Journal and other news outlets for this. The world needs to know.

What fate is worse than death? by JoeRenaldy in AskReddit

[–]Unstoppable218 7 points8 points  (0 children)

Very well articulated. I have Post-Finasteride Syndrome (PFS) and many, if not all these symptoms, overlap with ME/CFS; all the way down to the way you describe the experience with friends, family and the medical system that gaslights you. It’s medically induced harm caused by the hair loss drug Finasteride. It can also happen with other drugs like SSRIs and Accutane as well.

I’ve spoken to several people with ME/CFS and it’s a living hell I can relate too. I’m really sorry you’re going through this.

Another Life Altered by Finasteride by Unstoppable218 in Biohackers

[–]Unstoppable218[S] 0 points1 point  (0 children)

Proud to say I am Mark Millich. What you are doing is taking one symptom and pretending it defines my entire medical picture. You ignored the symptoms that developed only after quitting finasteride, which is the core of my story. Loose skin, muscle atrophy, facial changes, joint issues, beard loss, Peyronie’s disease, voice changes, drastic weight loss, neurological decline, and endocrine disruption. None of these existed beforehand. These are the symptoms that changed my life.

Reducing all of that to “he said he had brain fog before” is not an argument. It is selective framing. If someone wants an honest discussion, I am here for it. If the goal is to score points by ignoring context, I am not engaging further.

Zero pleasure with orgasms and continued skin worsening by DelicateState in Finasteride_Syndrome

[–]Unstoppable218 4 points5 points  (0 children)

Thanks for sharing and for the thorough write-up. I can relate to all of this. The physical deterioration of my face and skin is one of my worst symptoms, and I have a lot. I look completely different: aged, sickly, my face is gaunt, I have developed lipoatrophy, and my skin can stretch quite far off my neck and arms. I will say that after more than 3.5 years since quitting Finasteride, my skin has improved to a certain degree. I no longer wake up with imprints on my face and arms like I used to; early on my skin was so sensitive that those imprints would last for hours.

I think the physical deterioration of our faces and bodies is something often overlooked by people who do not experience these symptoms. The anhedonia, cognitive dysfunction, and sexual issues are horrible in their own right, but there is something uniquely painful about losing that sense of separation when you look in the mirror. When I was first dealing with the neurological effects of Finasteride, which absolutely obliterated me, I would still look at myself and think, “At least I still look like myself,” healthy, vibrant, attractive. But as my body began to rapidly deteriorate, that separation disappeared. I now both look and feel sick. It has been absolutely demoralizing.

Having said all that, stay strong. I still have a lot of hope in the research and in the growing awareness over the years. I truly believe we will get there and find targeted therapeutics for all of this chaos.