Brain fog guy's - What can we do to shed more light and attention toward's the mental and physically disabling element?

Symptoms Neurological
#1

“This site and many posts here give the impression that main problem is sexual ( or lack of sexual feelings) which is very misleading. Our physical problem is far more serious and crippling. I wish people here had paid more attention to physical and metal disabilities resulting from it rather than crying for sexual loss. I don’t mean I don’t have sexual problem I have very serious importance sometimes almost 100% importance.” Interesting recent quote by spstriken.

100% Agreed. But, WHAT would you guy’s HONESTLY suggest to change this? Please share your idea’s.

Example’s:

  • Research
  • A separate website or forum that would emphasize this.
  • Media exposure.

Personally, I think this forum is fantastic, and I’ve had much support here, but how many success stories have your read that were brain fog related? How many news report’s or studies were brain fog related?

God bless you all.

#2

I don’t know.

You know what would happen if you went to a doctor, they’d just try to shove anti-depressants down your throat. My own suggestion would be to start from the bottom up. Writing letters to media sources, researchers, regulatory agencies that Propecia messes with the brain just as much, if not more than it messes with the penis.

#3

Agreed, and have been down that road with the doc’s. Problem is that it’s not really a depression for most. It’s an altered state of reality. Everybody knows that the brain is more critical, than a penis towards survival, and avoiding homelessness. Without sounding critical, the slant of this forum, is heavily penis/sexuality dysfunction slanted, and I feel we need to have more of a separate presence. I just have no idea on how to do this.

I think a good first step, is to contact the media and get the word out.

Are you a skilled writer that could help? I’m definitely down for establishing ourselves more as a propecia casualty. The more this gets publicized, the better we fare in getting some research done and getting help.
You, and I, would agree, that brain dysfunction is a very serious problem. I’ve found we have to be very careful in how we present ourselves and our wording to describe this problem. It is not depression. That’s how ‘they’ will try t dismiss us as idiot’s. The word depression has to be avoided in conversations. That word is an insult to us! It’s a disabling and frightening state of altered reality and a wretched life we lead now thanks to that drug!
I have heard guy’s coming back from Iraq with brain injuries describing what we have! No joke.
We need to step up.

#4

Yes, we do need to step up.

I always include the cognitive defects Propecia causes along with the sexual problems. Try to write a short letter to the Las Vegas Review Journal to see if we can at least get a response.

viewtopic.php?f=29&t=6201

#5

I honestly feel that we need a seperate presence to organize better. A separate website dedicated to the mental side’s would be great, along with a friendly link up and relationship with this forum, because it would allow other’s (who feel frustrated that the mental side’s, are not getting enough attention with the media, news, research, doctors etc.) to organize in one spot.

I really would be interested to know, percentage wise, how many of us are really out out there with, mental side’s being the predominant health issue. A separate presence would be certainly helpful to many hear who are primarily focused on curing our horrific mental side effects. I did do a phone interview, with the hartford courant newspaper(it’s still online on their site), and often mentioned that I suffered mental side’s, but after reading the story, it seemed to not come off that way. There is far too much attention paid to the sexual side’s as their is still a fascination with sexuality, and link’s up rather well towards the vain side of thing’s like hair and appearance, which the media is always salivating to hear about and report on.

We live in a very vain society, and I feel that exposing the mental side’s more, would add to our credibility from a sociological perspective, and more of a compassionate response from the public. We need people to feel more for us
The public needs to hear something about the mental side’s to create a balance and outrage.
This would benefit us all, including the sexual guy’s out there. The pendulum must shift, so that the general public knows, that this drug is capable of actually turning a previously healthy young mans brain, into a severely altered one, memory loss, spacial memory issue’s, brain fog, and a form of cognitively altered reality dysfunction. Imagine the reaction to a story like this!

#6

Imagine during a tv interview, someone saying “i wish i took LSD, or another illegal street drug, instead of Propecia”
I certainly feel that I would be better off, and I’ve never taken an illegal drug before. LOL
I’m sure you heard of individuals who took acid and never came back to earth. We are sadly like them!
The only difference is that we took a legal drug approved by the fda!

#7

The way you shed light is spend 5 min to write a short concise summary of your problem and how you have difficulty focusing (not saying I’m losing my mind etc…) and email places like NIH. They have the means to figure this out. Next email national new programs on ABC, NBC and CBS etc…

#8

I agree, BUT, what would also be more effective is, a petition style letter with many signature’s, from the brain fog guy’s on here, and then mail it out to several of these outlet’s. Problem is, WHO, is a ‘brain fog sufferer’ on this forum? It’s really hard to tell without reading each member’s individual story. I would contact each and everyone on here, if I knew who had this issue and who didn’t. I guess pm’ing every single member on this site, for a signature down the road, is what must be done.

Thanks for the comment Oitspitw.

#9

The problem with this post-fin issue is that it is very difficult to diagnose.
It is also a common finding/side effect in many drugs that affect you metabolically.
How can you prove this to someone if it is not measurable.
You see how much people are trying in here to prove things that are quantitatively and qualitatively measured and still there is very little belief.

I guess this could be one of the hardest issues to deal with

#10

salonjk, I understand what you have stated, but there need’s to be a “presence” out there at the very least, for the cognitively impaired men, and so far there isn’t any! A petition letter with many signature’s, is a huge step to gain attention and perhaps some help. I have some experience in politics and organizing. Petitions are effective - trust me.

Let the expert’s try to measure this and not us. That’s the problem, WHY, are we still trying to solve this by ourselves? I’ve been on this forum for over 3 years, and it’s the same. So far, there has not been any sufficient mention of the suffering brain fog men out there; within the media, private research or elsewhere significant. I am simply frustrated and realize, that more has to be done! I also think, that sending something like a signed petition, to our local state representative’s - congressmen is also a good idea. Just my take.

#11

“You see how much people are trying in here to prove things that are quantitatively and qualitatively measured and still there is very little belief.”

It would be VERY HARD to discredit a massive amount of signature’s, from men claiming to have been cognitively impaired and altered, by using this drug.

Respectfully, the sexual side’s have gotten the majority of the attention thus far in the media and research.
If I have to be the one guy on here, to beat the drum, for the mental side’s guys getting some real attention out there, then so be it.

#12

Robertino, you keep going about this. Firstly many if not most guys have BOTH sexual and mental sides so it is wrong to talk of some kind of divide.

Second, we still have not received anywhere near the coverage we merit on any of the sides, despite the big strides made in the last year. It is hardly a well known problem within even the medical world or society in general outwith the hairloss forums. Even the big magazine articles published seemed to suggest this was a treatable condition via hormone therapy. So, I don’t get your point that the mental issues are being ignored in favour of the sexual ones.

I applaud your drive but it is wrong to split this condition up into different elements. Ultimately the more the world learns of PFS the more it will hear about the mental symptoms. It’s just that the sexual ones are the most uniquely attention grabbing and horrific to outside eyes.

#13

I respectfully disagree with you luckfax. I am not looking to divide, but simply trying to shed more light (or any) on the mental side’s. We are all brothers here. Subsequent brain and cognitive issue’s, due to taking a particular drug, is a VERY serious problem, and I feel more attention needs to be given to this. You can’t become homeless if your penis doesn’t work, but you certainly can if you have serious cognition issues. Please don’t misinterpret what I wrote. I’m simply trying to do something positive here and not damaging. I’m not playing the division game here, and I only feel, like others on here, that the brain issue’s we are experiencing need more attention, and are very disabling to most on here.

#14

“I applaud your drive.”

Thank you. I’m doing what I can. I made a promise to my dieing mom, who saw me suffer as well, during her last days on earth, and saw me turn into a monster because of propecia. A promise is a promise, and what I’m trying to do, is only the right thing to do, not just for myself, but for everyone suffering.

#15

"It’s just that the sexual ones are the most uniquely attention grabbing and horrific to outside eyes.
[/quote]
This is a problem, that I’d like to challenge on a fundamental realist level. No disrespect, but I think we need to strive for a balance of awareness and attention. I respectfully disagree, and feel that having daily cognitive issue’s, is far more horrifying. Like I said, you have a better chance at avoiding homelessness, with a damaged penis, rather than a damaged brain. Alot of us brain fog guys are really struggling every day to just survive and make it through a day! ain
I respectfully disagree with you on that fundamental level. The brain is far more crucial towards survival than a penis.
Please respect my differences. I simply want to raise more awareness towards the brain issue’s. No harm done.

#16

This really not a partisan issue. What are we democrat’s and republican’s arguing about an issue? LOL
Seriously, nothing wrong with ANY awareness trying to get done, by ANY one of us, I would think…
I applaud ALL of you who have helped raise awareness thus far!!!
Kudos, Respect and much Props!!!

#17

The hardest part i see here is trying to make people understand what brain fog actually feels like, sure ed and loss of libido, that speaks for its self But brainfog is easily brushed of because theres no way the numbness i have in that part of my brain, and the effects it has on my vision, hearing, thought process can be experienced, im fucked but unless you are in the same boat you will never know what it feels like.

Maybe we could set up a ride at disneyland called the Propecia experience, where we give people a 12 pack of beer then smack them round the head with a baseball bat.

#18

Hilarious Tim!!! Not necessary with the baseball bat and booze, really. LOL!!! I know where your coming from here…
I have everything you mentioned, and I’m sure there are MANY of us here on this forum who CAN RELATE to you. Trust me on that. We need to get a petition started and raise more awareness.
Dude, many of us here have many similarities and symptoms man!!! Believe me, you are not alone!!!
We need to raise more awareness! We are not to be ignored!

#19

Robertino, perhaps you could focus energy on quantitatively and qualitatively finding a way to measure brain fog. As Tim states:

I’m with Tim, it’s impossible to understand what this is really like unless you are going through it. It’s called brain fog because of the analogy of visual impairment of being in heavy fog. Why don’t you look through the threads already on brain fog and cognitive impairment describing it, isolate some of the key factors that makes it different from prior to finasteride treatment, and highlight them here? Being able to scientifically and understandably describe the before and after change would do a lot to achieving your goal.

#20

I respect what you have stated martin, and thank you for the advice. So far the only guy on my team is me. lol
I will begin gathering the necessary information, and proceed in getting the word out regardless, in whatever way, that I am honestly capable of doing. I will start with my local congressman and newspaper.
It’s not really my strength (or most of us on here) to scientifically try and measure this out, in scientific terms or in quantitative analysis. Initially, all we need is general awareness, and so far all we have is nothing.
I am NOT a scientist or a doctor, and they (the public/media) don’t expect any of us to be. Wouldn’t you agree?

Yes, nobody can thoroughly understand what we really feel like, but this is not necessary initially. Historically, this is not the first drug, that has caused a total shift in cognitive functioning. Initial awareness is a great start.