Back From Boston

Science PFS Research
#41

Quick background first… Used propecia from about age 30 to 40, when sides started. Been off 5 years now.

Some of the symptoms I have today… Feeling of disconnect to the penis. Unable to get an erection or maintain one without constant touch/contact. If I am having sex, often I will not be able to orgasm/ejaculate. Sensitivity is still an issue. I could lose my erection during sex in the time it takes to switch positions. Cialis and vitamin C seems to help a lot, but, sensitivity is even further reduced. Some times I am able to finish in a fairly normally time. I also have that weird left twist of the oenis head that a lot of guys have.

I have worsening tinnitus. Sometimes it feels like my head is shaking. Nothing severe, but, it’s worrying me. I’ve had dry skin on my forehead, scalp, neck. I get red spots like eczema or folliculitis or something in those areas. I get different looking red spots on my chest, stomach that do not look like acne. Almost look like allergic reactions. I’m sensitive to any fragrance, think some foods, also. Never had issues with allergies before propecia or even during.

My calfs are ridiculously skinny. I have very very little body hair on my chest, back, arms and legs. My arms are also skinny. I have some flab around my waist that I never had until the past 5 years. I’ve lost muscle, feel weak. I get soreness in my shoulders, back, hands. I have numbness in my toes.

My night vision is lousy. The sun seems 10x’s brighter. I have been getting regular checkups at an ocular clinic because of my optic nerves. They seem to think I was born with this abnormality.

Mentally I’m just tired, lack any motivation. I have periods where I could care less about anything.

I thought I was doing good with my brain, but, there was a cognitive/memory test in Boston and my struggles made me think that I’m not back as far as I thought.

I will be the first to admit how fortunate I am that my sides are not as severe as others here. Believe me, I almost feel guilty about it. I know I’m not right yet, though. Considering I was such a long term user and have been off for a fairly long time… I thought maybe they could learn something from my tests… Maybe something that could help the worse off guys, get to my level, at least.

#42

Hey, i wonder if hardvard will give you a personal/private paper to show to your own results. If it so i want to hear your results because some of my symptoms are (sexual problems, extrem tinnitus, night blindness, x1000 light sensivity) exactly similar with yours.

#43

Bluejaysfan - not severe? You have almost every major symptom of PFS. I thought you were improving? Did you share the skinny legs, penis bend to the left etc with the researchers?

#44

Bluejaysfan, do you still find that Probiotics cure your erectile dysfunction?

Do the digestive enzymes you took for C.andida still allow you to have ‘sex all day’?

You still feel back to normal when taking ejaculoids? Or when taking yohimbine? Or when taking Ashwagandha?

#45

I’m sure you agree there are different degrees of severity with each symptom.

I was better before, but, it didn;t last. Do you think I said I was cured? Am I different if I don’t steadily improve, but, have ups and downs?

Yes, I gave them a list of all my sides.

What I said before was true at the time.

#46

Everything I wrote at those times was true. As long as I wrote it.

#47

Oscar has a jaundiced view of most on this site and mostly engages when he wants to somehow catch people out, and likes to diagnose most others in a similar way as dismissive doctors, as if only he has pfs in its pure form. He will scrutinise posts to look for discrepancies, much in the same way as a Merck defence lawyer would do. He fails to understand that human beings are complex organisms who have been affected in many different ways by this drug and likewise, a post from a year ago may be different to a poster’s opinion now. It appears classic troll behaviour and seems to display underlying psychological issues of his own.

#48

They won’t. I asked already. We are some time away from receiving a confirmed individual genetic diagnosis, detailing the extent of our own PFS.

#49

Fair enough.

#50

I don’t understand. So why don’t you try them again?

hmmmm viewtopic.php?f=3&t=6293#p53067

#51

Thanks Oscar for helping out by illustrating my point.

#52

You don’t think I thought of that, Oscar? Really? Well, I have tried them again to your surprise. It’s weird that something that worked 4 years ago, does not have the same effect.

A little story that might help you understand how my body works… The first time I took Cialis it was 10mg and I could get an erection if I sneezed (that’s a joke, but you get what I’m saying hopefully) for 3 days. The next time I needed 20mg for less of an effect. Then I would sometimes need 20mg in my system twice for even less of an effect. Over the past 4 years, I would never get the same effect of the original 10mg. Does that mean it didn’t happen? Nope.

I guess I’m rare in that my body adjusts to some of the things that worked previously. I know we’ve never heard stories like that eh, Oscar? That something works great and then just stops being as effective or effective at all.

Yohimbine was another one (the key ingredient in the ejaculoid). I asked my doctor for a prescription, again, probably 4 years ago. It worked for a while, then it wouldn’t be as effective as yohimbine bark. Then neither would be really effective. I would try either years later and have a totally negative response… agitation, freezing, shriveled penis, etc. Yet, it’s something that worked before. Why did it work before? I can’t tell you.

So it comes down to you thinking I was worse off than I really was, I guess? Is that right? You figure I was lying … that it doesn’t make any sense to Oscar that I could get better erections before while trying something?

I’ll give you one thing I’m sure guilty of. Probably a little overly optimistic in the past. That if I felt like I was really getting somewhere, it would be natural for me to keep going that way. Not knowing something like tinnitus, for example, could pop up or worsen 4 years later.

You’ll never have to worry about being overly optimistic, Oscar.

#53

Bluejaysfan- what I was getting at is are you at least trending toward better? It seemed like you were for months. Yes I know there are ups and downs, a cycle, but is each cycle less severe than the previous ones? For instance, I can say crash was horrible, 1-6 months following crash had periods of ejacuLtion with zero feeling, that’s now completely gone, 6-12 months had periods of complete numbness in penis, that is gone now, etc my point is are you completely back at ground zero?

#54

Ground zero for me was not being able to sleep for more than hour or two. Waking up all the time and eventually falling back asleep… Repeat. I couldn’t think straight in the day. Emotions were crazy. Although I definitely fluctuated, within months I could have had better erections than now by using various things. Right now I don’t think I could get an erection (say a 5/10 or better) through any visual stimulation. Whereas I could in earlier times. My penis looks normal though, right now, flaccid. Years ago it seemed a third the size.

Tinnitus is newish. The last 6 months or so is when I really started to notice it. The last 6 months this feeling like I can’t keep my head still. It’s very subtle and nothing that I find distracting. But, it seems to be new and I don’t know why it’s happening. I thought maybe too much B12/folate. That’s one of the reasons I stopped that. But, it’s been months now and I have both still. It’s not severe or anything. Just something I don’t want to get progressively worse.

It’s hard for me to explain. I think I peaked last year, all things considered. This year has been a bit of a drop. I lost energy/motivation it seems, which was a problem before. That slight fullness/pressure in my head…tinnitus. Erections so so.

I can say I trended down from last year. I know it seems I’m all over the place. But, when I write something, that is how I was at that moment.

#55

Bluejaysfan, isnt it strange that all of these dozens and dozens of supplements that you have taken over the years each seem to have such a massive and drastic effect on your mental, physical and sexual health?

Just been reading your very recent posts in the bizarre thread ‘Finasteride causes glutathione depletion and leads to CFS?’ where you again report the amazingly powerful effects of various supplements. Isnt that all a bit odd?

And have you reported these effects to the researchers in Boston when you met them?

#56

Hi bluejaysfan: just wanted to say thanks for taking part in the research, really appreciated. It would be good if others who have done it can post in this thread, so we can keep it on the topic of research.

Thanks,

Davey

#57

Oscar, did you have a history of psychological problems before propecia? You seem to have a problem with telling the truth. lol

Did you stretch the truth a lot to make yourself seem important or boost your confidence, before propecia?

#58

There are only three reasons you would report all these effects from these various dozens of supplements.

  1. All these supplements really have the effect as you described.

  2. You are lying.

  3. You have hypochondria.

And these supplements did not have the effect you report, no, Probiotics cannot cure ED. I doubt you’re lying on purpose, but I do worry that you have serious health anxiety.

Therefore someone may have taken part in the study at Brigham and Women’s Hospital who imagines health problems, seriously damaging any outcomes that so many people have tried for so long to put together. This is a genuine concern, not a personal attack.

#59

You’re just being your argumentative self, eh Oscar?

The effects from everything I took at those times, 2009 to present, are correct. The body is a complex thing, Oscar. Phantom DHT or not.

#61

Is it such a strange idea that a supplement could cause some positive reaction initially and then eventually whatever happened wears off even if you keep taking it?