Is there anything left to try?

General Discussion
, ,
#1

I was 20. Now Iam 25. I ve lost everything. Just like every single one of you. No use describing this hell.
Is there honestly anything that is left to try. Im tired of the torture.

  1. Is there no bloodwork, no diagnosis. of any kind that consistently comes out of the norm. My test when I was 21, came to 380 ng/dl. Thats near the levels that 80 y.o men have. But targeting it doesn’t help. Have we checked the upstream chemicals that end up making test and estrogen? Any inputs.
  2. This rxisk site has a hefty reward for the discoverer of the cure. If it is real, why don’t we use these funds to commision research into this instead of sitting around. @awor @Dubya_B mates do we have any insight into this?

I have been resistance training since october. On top of that, I decided I will live till March as if nothing is wrong with me. And believe me, I did. I forced away the constant pressure of impending doom from my chest. Every time I had a bad thought, I would push it away and think it will become better. I actually actually stayed hopeful. i look (nearly) chiseled but there isn’t a single iota of improvement in my symptoms. I can’t watch my life pass me by, I can’t watch everybody grow while I am still stuck in 2015. Not a single dream fulfilled. I destroyed my family’s lives. What will my mother and father and sister do. Forget about friends and romance, we’ve just been locked out of that. It hurts, constantly.

I really want someone to hug me and tell me it will be okay, I want someone to do it for all of us. But it has been 5 years.5 years with the lack of whatever hormone calms me down and makes me feel peaceful. 5 years of constant hopelessness just piling up. The pile just keeps getting bigger and my time just keeps slipping away. Haha.

I know some of you beautiful bastards can cope with this. But many people here had some time to enjoy. I and many others were very young. I didn’t get to do anything before all my options greyed out.

Is there, honestly and pragmatically, anything left for us to try? Something in the near future. Its ok for the answer to be no. It almost definitely is. Its not our fault. If it is, I need someone to say it so I can steel myself for drastic measures. I am heartbroken writing this, but it is what it is.

9 Likes
#2

I appreciate that it might seem that nothing is happening. This is not the case.

The truth of the matter is that money IS an issue but with the amount of money we’re looking at (that is to say, we don’t have much at all), it’s not as big an issue as finding the right people to work on the problem (see: the problems we’ve had with Baylor) and having a plan that builds on the work that has come before and actually has a good chance of improving our position. There’s no point throwing our limited resources in a number of different directions, especially the wrong ones.

You may be aware that recently Axolotl revealed that both he and Awor made an international trip to visit a scientist who would be very desirable for us to partner with.

The process here doesn’t work as some have suggested before which is to say that we would approach a scientist ask them to conduct whichever experiment has been deemed appropriate and then hand over the cash and wait for the result. It’s a more nuanced process (one which I am not fully informed of).

Rest assured that the greatest and most impressive scientists are not sitting idle, waiting for our call. We need to convince them of the validity of our proposal and that clearing space in their schedules to work with us would be part of something that would be interesting. Career advancing work for them. The money is a given, they are able to choose who they work with on merit.

In the meantime, everyone here can consider how they can strengthen our cause, well done if you have taken the survey. Feel free to remind anyone who is off medication for 3 months and still suffering side effects.

Take part in our YouTube project.

Share our social media posts.

There is more, but let there be no doubt that just waiting isn’t going to cut it, neither is throwing a monthly donation in. The more people that take part, the better.

Ask me what you can do if you want a job, I will find something.

3 Likes
#3

thank you so much for replying greek. i ll reply in the morning. ill edit this post.

1 Like
#4

Believe me, once we get some multi-substance research lined-up, RxISK will be getting hit-up by PAS patients, and hopefully, PSSD patients will join us.

2 Likes
#5

hey @PAS, I was age 25 when I got zapped by not only finasteride but accutane too. I am now 47.
I have had this issue since the late 1990s!

I am still here. I used to think the same way you are thinking now.

I have learned, through psychotherapy and through the support of a few really good friends, that my life and my self is not the same as my disorder, my post-fin post-isotretinoin syndrome. I have learned that my erectile functioning or my waistline is not the be all end all of who I am as a human being.

Although I am not in a long term relationship, I have several friendship and family relationships that are long term and loving–these people do give me a hug EVEN THOUGH they do not fully understand what is exactly going on. And that is what it is all about—support and love and concern even if they or I cannot solve it.

I challenge you to keep on going, keep on living, focus your mind elsewhere besides symptoms and disorders and syndromes. You as a person, you as a human being are good and valuable and beautiful.

Sending to you and anyone else reading this my powerful virtual bear hug!

4 Likes
#6

@Crossroads Thank you so much for writing this out man.
However, what would I be living for? I can feel no desires, and no rewards. I cant like food, I cant like music, I can’t feel the love I used to towards my own mother. No, this is not something I can live with. I have been trying. Its not just romance, I can’t feel ANYTHING.

@Greek and @Dubya_B Can we try this. If we can find ONE doctor, whos just ready to listen to us. Doesn’t have to be a scientist. If we can get him to come online here, sit him down with us in a chat (or voice would be even better).
And just tell him our symptoms, no theories, let him come to his conclusions. Whatever tests he wants, we will all collectively do it, post it online. It will have the benefit of showing our common irregularities too. We will eliminate false possibilities and lock on to the correct one symptom by symptom. This is not possible in real life because they see us as a single individual whose symptoms align neatly into a compartment. They aren’t able to see the full picture.
This will not take long to arrange, I am sure @awor and @axolotl and other mods and non modded people are in touch with atleast some people who can be interested.
We can pay them their online consultation fees and surcharge it by some factor, no problem.
Otherwise we’re just going around in circles. Its all just smoke and mirrors.

Oh I never meant it like that. I know you guys are working tirelessly and it is so commendable. Honestly, it is a thankless and so far such a hopeless job. On top of that, they don’t owe us anything.This is all volunteer work out of their kindness towards the community.
What I meant was, I saw that site in 2015 and the money is just parked there. Lets please use it. Are the people in charge of that site active here? If not, why not. What are they doing in the meantime. Let us get in touch with them and use those funds towards something. Can you help us get started.

I believe my ideas not a bad one. Lets please try it out. Please give it a thought. the medical team will have a good amount of data if we all run their tests and we will eliminate false possibilities pretty quickly and it shouldn’t be too hard to arrange. Just have to get them online here.
Can @awor and/or @axolotl elaborate on the meeting with the scientist. Is there any collaboration planned? Have any dates been finalized? Lets keep the communication up, there’s no reason not to.

#7

This is so sad. I feel for you bro and all others in the same boat. But I believe there’s not one single cure/treatment for all PFS sufferers. However, there are a number of common symptoms. I was 23 year old when I first took finesteride. I had remissions but not long enough for me to say I’m 100% cured. You need to try and look for all abnormalities showing up on blood tests, radiology, clinical testing, daily activities… etc. I know you heard this like million times already. But your testosterone is very, very low for 25y old to begin with. That alone is a red flag and should be assessed and addressed before looking into other things. Having said that, there’re many actions that can be taken based on your specific condition. PFS is NOT one single disease!

1 Like
#8

There are doctors who believe you, are ready to take your money and will listen to you.

This could be done quite easily and for free by cataloguing all the test results that are posted here. You likely need not have anyone pay for more tests. Or at least you could start with a good amount of data to kick things off.

I expect that nobody will want to do this if you don’t want to. The data is here, you just need to collate it. People on the forum have a long history of saying “let’s do this” but they mean “you do this” and end up at “I’m not doing that”.

Prove me wrong. I say that from a position of positivity.

Well, it’s not our money, but once again as I said in my previous post, money isn’t necessarily the problem. Having the right people and producing a plan with them is the bit that needs to happen most. As noted, that part is being worked on.

Not at this time. When there’s something to be announced, the admins will not be shy in announcing it. The most important thing is getting this off the ground. Announcing anything before it’s ready to be announced carries an element of risk, and as a result even with assurances, it will not be announced until ready.

In the meantime ask what you can do, not what the admins can do for you.

1 Like
#9

His testo is between 500-600, it’s highly unlikely that his issues are because it isn’t at 800-1100. Anything higher than 400 would be sufficient for most people. My test levels were always ranging between 500-700 both pre and post saw palmetto. Ofc it might be different for him, but I highly doubt it.

#10

The problem is that there’s no direction with these tests. There’s nobody who’s listening. If we get somebody to start from ground zero and then let them see where our symptoms point case by case, test by test, we will have a direction.

I am not demanding the mods to do anything, I don’t know who to get in touch with and I feel from perusing the site that there are people here who are more in touch with people who can help us. It doesn’t have to be a mod, it can be anybody who can get us started, give us something concrete to work towards. I don’t to sit here waiting for announcements without any ETA. Baylor has crushed enough of that.
Getting some onboard here who atleast listens will only have a positive impact. They won’t have to be fulltime, this could be there nighttime consultancy. No pressure for them, and more information for us.
They could refer us to their circle and help spread information for us.
I can remember 15 doctors off the top of my head who I’ve asked for help. It didn’t work out, its not like I haven’t tried.
I believe there has to be atleast one person with expertise and interest who could help us. We just need to get them here. If it doesn’t work out, that’s it. One more avenue we would have ended up exploring. less regrets, and thats the most important thing.

#11

I got my testo tested multiple times in 2017 and 2018. It reached 561 ng/dl. The difference from 380 to 561 did nothing for my symptoms. Theres something else at play here for sure.

2 Likes
#12

Similar to mine no change

1 Like
#13

Healy has updated on the status of these funds today. He laments that the donations have stalled. There’s also the acknowledgement that it will cost far more than $100,000 to really make inroads into the problem.

Some people have suggested that even if the $100,000 target was achieved, it wouldn’t be enough money to fund studies into a complex problem like PSSD – but this isn’t the point. One of the problems with standard research is that a study can typically only investigate one thing at a time, and at the moment we don’t know exactly what to look for. It would be very easy to spend $100,000 on a study that would tell us nothing.

However, there are already people working in areas of science and medicine who may hold important keys to better understand PSSD. For example, the recently published paper in the journal Bioelectricity introduced the condition to scientists whose work involves the electrical properties of cells – something that may be involved in PSSD. Having a $100,000 prize would encourage people to think about how their own research might help to provide some answers.

The RxISK Prize is an still onoing venture…

1 Like
#14

This is excellent, my thoughts exactly. I hope you weren’t talking about my “let’s do this” post as I am doing what I encourage lol

#15

Definitely nothing specific in mind, don’t worry!

Sadly, just a long history of people having ideas that they are certain will deliver a cure, but not enough belief to do the admin.

#16

Would the scientific approach we are trying to set up be multifaceted - meaning including all substances (fin accutane ssri snri)? Or would it mainly focus on fin?

1 Like
#17

If his testo is in that range then it’s time to look at free testo, SHBG, E2, DHT, Cortisol, DHEA-s, TSH, ft3, ft4, assess gut function and check other blood markers (CBC & SMAC-20). The journey to recovery needs a lot of testing to establish a roadmap. judging by symptoms only and treating them with X-Y-Z supplements rarely works, if at all.

#18

@PAS Go to the PFS Foundation website. Click on Resources, look for the list of Medical Professionals, either in your area or whoever you want to email/talk to on the phone. These medical folks are there for us. Many of us have gotten good feedback or good treatment from them, me included.

Forget about Baylor or all the other studies that may or may not be published. Leave the research to the researchers. Research can take years, so focus on yourself, not what you might read one day which might not agree with something else you read the next day.

You have to take a deep look at all the things you are doing or not doing in life regarding health, medicines, lifestyle, beliefs, then go from there. Relax, find ways to relax that are not toxic, stay off this forum if it is just a trigger for hopeless or anxious feelings!

1 Like
#19

Obviously I am here asking for help because this is something I have not been able to accomplish.
If it was something I could have done, I wouldn’t be here asking for help about it.
This is a forum to help each other, there are so many kind people here who are still supporting me and others. Many have PMed me since I posted this thread. I am so thankful to the admins of this site.

Thank you so much man! There are 2 professionals from India, I ll get in touch with them and see where we can go from here.

Hey man, thanks for the list. Not all, but I did get many of these tested in 2017 and 18. Everything comes normal. I even wanted something to be abnormal so we could have something to treat. I can go for these tests again now, but has any consistent treatment been found from blood tests? I thought this was a dead end for us (not saying I don’t understand the significance of knowing your blood test results, but still)?

Since august last year, I shut my brain and worries and anxiety and decided for the 10th time that I will just keep my head up. Being positive and doing resistance training and maintaining healthy diets will treat me. And I really, really did it. Every morning I woke up and didn’t feel the joy of life, I smiled and shook my head and thought ‘in a few months I will feel it, no worries’. It didn’t work a bit.

I don’t know how much longer I can hold on. Obviously crying here is not going to do anything about it, but this is the only forum that understands the pain. If I don’t talk here, where else do I do it? I don’t wanna die. But I can’t live either. What do we do haha.

1 Like
#20

Can you please share all your results from previous labs. Thanks

1 Like