Sad that I'm never going to get better

Coping
#1

It’s been four years with this sh*t, with a steady decline every few months. At this point I’m just waiting to have a heart attack or cardiac arrest and pass out. I exercise 150+minutes per week, but it doesn’t help. My diet could be better, but I do get some fruits and vegetables. Doesn’t seem to matter. Heart symptoms wont go away and instead get worse.

So I guess my life is done then. 27 years old, wow. I feel like I’m at least 20 years older than that. No point in trying to get an education or job then, I guess. No point in saving money or investing. No point in trying to date or make friends. No point in delaying gratification, might as well do whatever I want now, right? Because the way things are going, I highly doubt I’ll make it past 35. I mean I almost died early this year when I suffered a mild heart attack (mild is still very uncomfortable and painful, and scary).

My only hope at this point is the Mayo Clinic. Just trying to get all of my medical records, then I’ve gotta compile the relevant ones, correspond with them, get inputted in their system and get an appointment, THEN get approval to cross the border from Canada. Hopefully $40000 will be enough, cause that’s my upper limit.

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#2

A few things @Wings.

Myself and axolotl have said it before, but I think it’s worth saying again. If you do give into this, no-one here would judge you or think differently of you because of it. This disease is a fucking nightmare and many good people have taken their lives as a result.

However, we personally believe all of our lives are worth far more than that. If we give in now, what we say is that we’re content leaving the situation as it is, that we’ll not be remembered correctly, and that we’ll collectively die in an obscure corner of the internet. This disease will continue to exist, and we will not.

Secondly, there is other hope other than the Mayo Clinic, who I’m sorry to say will also not be able to treat PFS. We now know what PFS is after the release of Baylor - AR overexpression - and sadly the Mayo Clinic will not be able to treat it effectively. Our group is working as fast as we can to organise research into the condition and we hope to have an announcement soon regarding new research that will follow on from Baylor’s findings. $40,000 is a lot in these early stages of research, and it would go a long way to accelerating the speed at which we collectively find answers, and hopefully, treatments.

We are genuine when we say that if we collectively accept this condition for what it is - currently untreatable - and the resources we’ve poured into self-experimentation or treatments with very low success rates go towards targeted research that builds off Baylor’s findings, which confirmed Axo and Awor’s hypothesis, we will accelerate our understanding and find effective treatments much sooner. It’s your choice, always, but I’m personally disheartened every time I see patients spending large sums feeding clinicians who have little to no idea what PFS is, and with extremely sporadic success.

Lastly, I understand how you feel regarding your age. I got PFS when I was 22, almost 23, and it’s taken most of my 20’s from me. It will most likely take my early 30’s as well. But I have adjusted my expectations on life as a result, and I’m confident there will be a treatment for me in a timeframe that means I can still enjoy 40+ years of a happy, healthy life on the other side. That’s a long time. If you’re 27, that possibility exists for you too.

It’s unacceptable that we’re in this situation, but please think about what I’ve said. And if you’re willing to spend that much on the Mayo Clinic and are interested in our research projects, please reach out and I’d be happy to have a call to discuss in further detail.

Take care man.

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24 Year Old, PAS, PFS
#4

Really great post Mitch , possibly one of the most important posts ever written on this site, it provides us with insight and a reason to stand against what seems like a ‘hopeless’ situation.

Following on from a couple of points you mention…and forgive me if there is a post already covering this (but sometimes as you know threads get cluttered with a lot of irrelevant ‘opinions’ and ‘critiques’) is there now proof through the Baylor Study that it is Androgen Receptor Over expression that is the cause behind this illness ? Is this the hypothesis that - when tapering off and/or stopping finasteride the receptors have been flooded with androgens again and ‘switch off’ to accommodate the excess hormones?

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#5

They confirmed AR overexpression in penile skin. Since there were no asymptomatic finasteride users as control they can’t confirm or deny if AR overexpression is a normal adaptation or part of the pathology.

They also couldn’t conclude if the AR activity was under, normal or under “normal”.

If you want I can upload the full text for you. It’s not very long or hard to read.

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#6

I’d rather not turn this into a Baylor thread, so I’ll be brief in my response.

It is extremely likely, yes, that AR overexpression is responsible for the constellations of symptoms patients experience with this disease. Given Baylor’s findings, the extensive published literature reviews, and nearly 20 years of patient record on this site, there is no other plausible explanation at this point.

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#7

Do you think it could explain the change in neurosteroids to? Like no DHT or Allopregnanolone in CSF etc?

#8

Thanks for the response Mitch , I appreciate . I will look into the Baylor info for sure .

Agreed - wishing the original post @Wings the best and just want to encourage you to keep going and not give up on feeling better :pray:

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#9

How about this one?

Characteristics of Men Who Report Persistent Sexual Symptoms After Finasteride Use for Hair Loss

markers of peripheral androgen action and expression levels of AR-dependent genes in skin did not differ among groups.
fMRI blood oxygen level-dependent responses to erotic and nonerotic stimuli revealed abnormal function in brain circuitry linked to sexual arousal and major depression.

We found no evidence of androgen deficiency, decreased peripheral androgen action, or persistent peripheral inhibition of SRD5A in men with persistent sexual symptoms after finasteride use. Symptomatic finasteride users revealed depressed mood and fMRI findings consistent with those observed in depression.

#10

I still have some hope for the new kappa antagonists…They might be something that might help us :smiley:

#11

That was one of the nicest posts I’ve ever received on here. Thank you very much. I don’t really know what all to say. I shouldn’t have even made this post, it’s just hard to deal with this when there’s no known cure. But the Baylor study gives me a lot of hope. With respect to the $40000 I mentioned, I don’t know if I would donate all of that to you guys right now because: it’s all of my savings, and with the Mayo clinic, maybe they would find other problems with me that they could treat and make me at least feel better enough to live fully. If that makes sense.

But I forgot to say that there are plans in the works for me to start earning an income, and if they come to fruition, I will most definitely talk to you guys who run this site and participate financially. Again, nothing is guaranteed, but for what it’s worth, I’m not just saying this to create a bunch of huff, I really do want to find out WHAT this is and HOW to fully cure or, at least treat it. And the Baylor study definitely gives us a great point to start at.

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#12

Also thanks to the rest of you for the kind responses. I’m definitely going to do my best not to make posts like these. They’re just bringing other people down, and I don’t want to do that. Funnily enough though, as I’m typing this post, my left ear (the one that’s been giving me chronic blockage issues for almost a year) started ringing again. But anyways, I do feel optimistic with the release of the elusive Baylor study that took a long time, and hope that it will accelerate efforts to solve this problem once and for all. Hopefully one day we can all move on from this site, and rename it to “propeciacure”.

All the best everyone.

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#13

@Sugarhouse you are a hero

#14

bro mayo clinic won’t be able to help any of us.

the drugs that might be able to help us are used in cancer treatments. but we need research done further to determine which ones.

pretty sure there are compounds existing RIGHT NOW that will make us feel better but our situation makes taking anything risky without determining root cause/mechanism, and additional information on whats going on with us

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#16

You’re welcome @Wings, and sorry that your post became somewhat hijacked.

I definitely wasn’t asking for 40 grand by the way! Just wanted to share my view on how we can more effectively allocate capital in our community. I understand that isn’t possible right now, as our team does not yet have an offering to allocate that capital towards, but we are hopeful it will be soon. I posted recently about our charity registration being held up as a result of COVID, and that unfortunately is also holding up our research efforts.

I would have to agree with @lakehouse though unfortunately, in that it’s unlikely the Mayo Clinic would be able to treat your symptoms effectively, at least in the long-term. It’s just a more expensive version of self-experimentation, but at the end of the day, it’s your health and your call how you spend your hard earned and no-one else’s.

Like I said, if you’re struggling right now, please private message me. I’m more than happy to talk to you on a personal level, tell you some more about our vision for this community and what we’re working on, and give you a bit of hope. Door is always open.

Take care.

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#17

I have spoken to many patients who have spent 10’s of thousands of dollars trying to cure themselves and they just end up back at square one or in some cases worse than before. At this point, they concede that it would have been better off directing that money towards research. I am sure millions of dollars have been wasted this way. Research is the only reliable and sensible way forward. This community should be a lot further along than it currently is but I am hopeful with the Baylor results and upcoming research projects in the pipeline that we can make a real advancement in the next 3-5 years.

I wonder sometimes how in 20+ years an ultra wealthy person hasn’t gotten PFS and donated millions to the cause themselves. This would be one of the best things that could happen for us. Although I am not wishing this disease on anybody.

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#20

This is a good post. We need more info on this to help us examine what we are assuming is the cause of the issue.

#21

Sorry, I need to be frank. It’s not a good post. Harvard was a terrible study as they examined tissue from the upper back where androgen expression is extremely minimal.

It would be like looking at a broken big toe in a patient with lung cancer - completely irrelevant.

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#22

Ahh good catch. I didn’t see that in the article. Thanks for the call out.

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#23

If you build it (new study) I will come (donate).To OP: your choice but Mao Clinic is money down the drain with PFS. Donating to the follow up study, even a fraction of the 40k and saving the rest, isnt. You got fd with finasteride, dont add insult to injury by losing your money.

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#24

I agree, if the money that’s wasted on self experimentation would’ve been donated to research instead we would be making progress way faster.

I will be donating a significant amount as well once there is an announcement on further research. I think that that is the best value you can get for your money, not self experimentation or clinical appointment with minimal results, but scientific research.

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