pvdls story

Member Stories
#21

Exactly. And that is why we cant just all say “Im Out”. If thats the mantra, where will the income come from to finance the foundation? The more support we give them the sooner we will have an explanation of what happened to us.

I would say the minimum should be 10 dollars per month with a goal to increase your income to donate more. If we get 500 people to donat 50 bucks per month the income of the foundation would explode. They are severly under financed.

I believe that a cure for PFS would be a significant breakthrough for many sexual syndromes as well as for people who suffer from anxiety, depression and lack of energy. It is a perculiar case were the effects on the body are massive, but not a single ounce of knowledge has been put forth by the doctors. Apparently the body can deteriorate in most of its important functions, without the docs being able to even explain what is happening. PFS has really pin pointed a massive lack of understanding regarding crucial mechanisms of the body.

Thus we might have stumbled upon something significant for the entire medicial community with PFS; and not just some irrelevant special case (tinnitus for example).

Of course we dont know, but there is hope that once we shine some light on the issue through studies, more people will get interested.

#22

I recently told to some of my close friends about PFS, and that was a liberation. In my case it was easy, because when you say the illness is causing you muscle loss, joint and bone pain, collagen loss, vision problems, neuropathic pain etc., and then you say you also have some sexual problems, nobody cares about the sexual problems, as they obviously get much more worried about the other problems. Not only it is a liberation, but the thing is that when I spoke about the foundation and the need to fund research, most of them said they were going to donate. If many of us could get their closest friends and family to donate, that would probably greatly increase the income of the foundation.

#23

Of course we have to first donate ourselves before asking anyone else to do it. But in my opinion it would be appropiate for a family member to donate as well, if their son/brother/ spouse etc. is suffering from PFS.

Donation link: pfsfoundation.org/donate/

Even though I dont have a huge income at the moment (student), I have set up a recurring monthly donation via paypal.

If you think about it: If 500 people donate 20 bucks per month, that adds up to 10000 usd per month. That would be a huge bump in comparison to what the foundation currently takes in, as far as I know (I believe they only take in 30.000 to 40.000 usd per year!).

#24

In other words:

If everyone visiting this forum sets up a monthly recurring donation, we get a well funded research team for 10 bucks/ month. I would call that a great deal!

#25

You and notna are brothers?

Did you both take fin at the same time and crash in the same way with the same symptoms?

Are you twins?

#26

Yes we are brothers. No we are not twins. We took propecia at the same time and crashed when we discontinued in march 2014.

My brother (2 years younger) and I have the same sympoms (highlighted in bold are the most pressing ones):

  1. Chronic Fatique (both used to have lots of excess energy)
  2. Facial Wasting (jawline, chin and cheeks have gotten a lot smaller) & facial fat loss as well as thinning of the facial skin
  3. Muscle loss on the forearms and neck
  4. Fat gain around the belly and hips etc. (10 kg for me)
  5. Loss of sex drive, spontaneous erections, morning wood, sperm volume and penile shrinkage.
  6. Low mood/ anhedonia
  7. Shrinkage of the adams apple
  8. Dead/ brittle/ straw hair (both used to have great hair)- only looks less dead when not washed for several days

And btw: My brother does regular gym sessions (which are very tough due to his fatique problem) and has had no improvement. I do no gym and am the same.

#27

Have you guys tried anything to get better?

#28

Have your symptoms stabilised? If so, how long did it take for them to reach their stable peak?

#29

I dont know if they have stablized fully but I suspect they have. It took about 3 years. The fat gain came suddenly a 2 years into the process. All of the sudden, despite no change in diet, I gained about 10 kg around the midsection.

#30

As I said: My brother visits the gym 3 times a week and also jogs (which is very tough since he is suffering from chronic fatique). However his symptoms haven improved any more than my symptoms, other than that he has less weight gain around the midsection. But he also has this symptom, since he still has a lot more fat than he would have had without pfs. I suspect we would be taking about almost no fat around the midsection and a more defined body. Instead he has quite a bit of fat and smaller muscles.

#31

I have the same symptoms…my list is in the physical sides section but the amazing water weight and fat gain are the worst…I have gained 60lbs was an avid runner…Can’t run even a mile now and hair is like straw…Fried and much thinner…I have dubbed it straw hair or old lady hair…My body is totally destroyed now from this shit…

#32

I forgot to mention these physical symptoms:

  • slower beard growth
  • skin has lost pigmentation/ color, used to be a lot more orange and oily, now dry and grey/white