Best of luck with the studies awor. May this be the first step into a full recovery for everyone.
I will be a little bit more direct in my wording than Mew.
We currently have a consortium of three scientific research institutes which are working on this problem. We are not doing just one but multiple experiments. They are all funded, and nobody in this forum is being asked to participate in the costs of the studies. People are only being asked to participate. It took me three years of my life, investing substantial personal time and money, to get where we are today. To get this consortium going was the effort of multiple people from this forum. It took us over a year and many hours of negotiation and field work to get this set up. We have scientists from various fields in the areas of genetics, urology and various other areas in molecular biology working on these projects. They all have an excellent understanding of hormones.
These studies are not cheap. You can rest assured that if three institutions are putting money into this, they have a pretty good feeling about what they are doing. May I ask in return, what qualifications do you have to “doubt” what is being done here? I doubt that you have any whatsoever. You should be happy that we have gotten this far instead of spreading “doubts” about these experiments. You have no idea of exactly what is being looked at and don’t have the necessary information or qualification to judge what is being done here. Just sitting in the forum blowing smoke out your ass is not going to get us anywhere. We need more people in this place that are prepared to take action in the real world in order to get our cause going. This above all includes participating in studies. Your contribution would be much more valuable if you would participate in this study instead of guessing what the cause of our problem may be.
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I know – I’m one of these guys. Dr Goldstein performed the test and said that neurological damage is reversible with testosterone (which, as we know, is not the case for pfs people)
As you said in the previous quote, we have already tested and proved that we have penile insensitivity. It is useless to just replicate the results, while, I think, we can achieve more. I was suggesting to design the experiment in such a way that it can prove that we are different from people with a simple hormonal imbalance. In order to achieve this goal, it is necessary to prove that the participants have both 1) good hormonal levels and 2) penile insensitivity.
If you don’t care about the first point, the conclusions of this experiment will be uninteresting, such as:
“These guys have penile insensitivity. They might have low free T, but we don’t know for sure because we haven’t tested them.”
If, on the other hand, you care about the first point, the conclusion of this experiment might be more interesting, such as:
“These guys have penile insensitivity despite having good levels of free T and low levels of E2. This suggests that they suffer of some sort of androgen insensitivity and more research is needed at the molecular level of the androgen receptor etc…”
Although I’m in a different field, I’m in academia, I publish papers in the top journals of my field, and I certainly know that the goal of researchers is to publish papers, not to help people. If these researchers know how to do their job (the job of researchers), they will try to maximize the number of papers they publish, which means that each paper they write will have a very marginal contribution to the previous ones. In this way, they will have work to do for a longer time. For example, the first paper will be about proving that we have penile insensitivity (which we already know). In the second paper, they might try to look at hormones too, etc… I think you should try to push them to look at hormones too from the beginning.
I also serve as referee for papers, and I’m skilled in finding logical flaws. Although I do not have any qualification in this field, Dr Goldstein does, and he told me (see above) that penile sensitivity depends on the levels of T. I also know that we want to rule this out, i.e. we want to prove that we have problems despite good hormones. Therefore, we MUST make sure that the participants have good hormonal levels.
May I ask you back: what qualifications do you have to organize this study? I see that you are very focused on the molecular aspect, but, as Dr Crisler says, you don’t understand how hormones work.
. You can read it for yourself here: musclechatroom.com/forum/showthread.php?3611-Official-Finasteride-Thread/page52
And you cannot completely disregard hormones by simply saying that they don’t matter in our case, when we have recovery stories that suggest otherwise. I hope that among the people that are organizing this experiment, there is somebody who is interested in seeing the hormones of these guys with penile insensitivity.
This is very offensive. I really mean to give some constructive advice. I don’t really understand what’s wrong by suggesting how to design a better experiment with little effort. It’s very sad, though, that instead of addressing my doubts, you are just barking at me.
Well, my doubts stem from not having enough information – you just asked for volunteers for a biopsy without really describing the experiment. Could you please shed some light?
Awor, great work making this happen. Ditto for anyone else who worked on this.
Lab testing on PFS patients by qualified clinicians has been the gold standard aim for the PFS community for ten years. Making this a reality is a huge achievement: massive kudos to you.
I’m circumcised, and insensitivity isn’t a huge problem for me, so it doesn’t sound as though I’d be much use in this case. But if there are future experiments that I can contribute to, keep me posted: more than happy to fly to Europe, and whatever else.
As for M-81, you’re giving his comments more due than they’re worth. Awor, Mew, we’ve seen enough to know that most of what happens on this forum is not rational, or useful. Maybe keep this a very disciplined thread, and only allow messages of congratulation and legitimate enquiries about the experiment/taking part in it, and delete all other posts: we don’t want the message of this thread to be obscured.
However, I can’t resist saying a few words to M-81 myself. M-81, you seem an intelligent person. Much of what you say about academia/the research industry is true. But I’m sure the scientists who are running this experiment have got the basics covered. Really, it seems as though you have just come forward with the first random objection that came into your head, without giving the matter much thought at all.
You are arguing that baseline hormones shd be tested. You argue that this is necessary so that when the study concludes that these men have penile insensitivity, people can’t just write that off as a consequence of abnormal serum hormones. But this study isn’t about concluding that PFS men have penile insensitivity. It’s taking the existence of PFS and penile insensitivity in PFS as a foundational assumption. It’s asking PFS men with penile insensitivity to come forward, so that tests can be performed that help us to see what is different about them. Presumably, the thought is that they will find molecular/androgen receptor abnormalities in the tested skin. The conclusion will then be something like: all these men with PFS share this same androgen receptor abnormality. In short, the whole penile skin insensitivity thing is a means to an end, not the end itself.
Also, your argument has changed over the course of your posts in this thread. I suspect it is, at heart, much as it sounded in your first post: that is, an unwillingness to accept the idea that PFS is about molecular/androgen receptor change, and a desire to push the idea that it is about abnormal/fluctuating hormones.
If you can’t contribute to the experiment itself, the other thing you can do is encourage others to take part. Do that, instead.
My penile numbness is constant. It has never been fluctuating. Since I have taken finasteride 8 years ago, my whole genital area (specifically my glans and the rest of the penis) is numb.
m_81, I think it is wrong that most of the people have fluctuating sensitivity. Of course there are people having fluctuating sensitivity. However, I have rarely heared of someone being fully recovered from insensitivity!
Ok, thanks. Like other mentioned on this thread, I also have complete loss of sensation in my unit. There has never been any improvement at all in this area. It is exactly the same, a complete loss of sensation.
I pinched my penis today almost as hard as I could and there was almost no change in the normal constant ache I have since crash. I have had tissue changes, alot of shrinkage and the large vein on the left some others have developed. So, I’m still not sure if I’m what you are looking for here. I’m such a mess down there that I havn’t even put much thought into sensitivity. I’d also be willing to travel to Europe to help and will do whatever else I can in my power.
M81 makes some good points and I think it’s very natural for there to be alot of anxiety over how things are conducted considering how this has effected us all. But, I think I can safely say to everyone here that Awor’s intentions are beyond reproach. I do think it’s safe to say this is not a hormonal issue for the majority of us. I have had hormone levels all over the map with no changes in symtoms.
Awor- I understand you can’t say much, but are there plans that all varients of this condition will be examined (if that makes any sense)? I’m just hoping that some varients, namely mine, arn’t overlooked.
[On the subject of penile sensitivity, but not the causative molecular biology]: You could also pinch the skin just past your watch’s wristband and feel no pain.
I’m not saying you don’t have penile insensitivity–I can barely feel my dick when I have a cialis-induced erection myself (I have to look down to see if it’s hard, or brush my hand on it). But I think sexual sensation and pleasure/arousal are what we’re most complaining about?
I’ve done the heat/cold threshold perception testing and my thresholds were high (indicating insensitivity). However, for a brief week, when I posted my premature near-recovery, sensitivity came back. This, to me, in my case, indicates that it is not a permanent change, whatever the source of the problem. And what about those who had one-day recoveries, or several months of recoveries where penis size/sensation/function was back to normal? They reverted to their original condition, but momentarily, they had sensations like yesteryear. [Just thinking aloud here, providing food for thought; in no way disparaging this testing effort.]
I agree. Since I don’t know what precisely is being tested, I cannot comment. I share reservations about how academia [in general] does research as well, but this is Awor’s baby, and I know he has nothing but the best intentions, and I’m sure the concept has been scrutinized to his satisfaction. He is, after all, financing this. If you’re a serious penile tissue donor, I think you are within your rights to better understand the parameters of what is being tested. [But please, if it is within your means and you have foreskin, contact Awor!]
[I have no foreskin and cannot make the trip. But those who do meet the criteria of the experiment and are able to make the trip–please do! I agree with Awor that only good can come out of it, whether we rule something out or discover something intriguing.]
[Edited for clarity.]
If you didn’t notice: the pilot starts NEXT WEEK. Understand? You want to see some hot scientist action, possibly figuring out stuff beyond finasteride, your chance is now or never. I can’t participate due to financial difficulties from the start but if i could i possibly would. Prostatis or not, we don’t know what exactly happens in our bodies and why it’s us and not our cousins, uncles, fathers and whoever who have prostatis but never seem to get into the crash/PFS way of things.
So please participate if you can.
Getfinauser, if you are referring to me, I do not have foreskin, as mentioned in my last post, which disqualifies me from participating. If you are referring to the general forum members who do qualify, I agree. Qualified PFS sufferers should be jumping on this opportunity.
See my above edits in bold, just in case my tone and objective were misinterpreted.
Thanks for your supportive comments, Scared and the other reasonable people in this place. I think those addressed understand the essence of this.
I’ll be a little more precise, without going into too much detail. Yes, a key hypothesis is that we are dealing with an abnormality in AR signaling. We have a clear idea about where this could potentially be located in the pathway. We know exactly what must be done to verify this hypothesis, and that’s what we are going to do. That is the way science works. You look at the problem, you collect as much evidence as you can and develop a hypothesis. Then you proceed to verify it; either it’s true or false. In the best case, we will have figured out the basic etiology of this problem (PFS and beyond). In the worst case we can eliminate it, and then must look elsewhere. Either way, we will gain through this. In the first case a lot, in the second case less. Also, this is not the only experiment that we will be doing.
If what we suspect turns out to be true, this will represent a most significant discovery in the area of AR biology and will have ramifications which are so large, that they currently are hard to grasp. The people who will publish this are going to get much attention, worldwide. It is for this reason, and because certain pharma companies may be reading, that I can’t go into more detail. The involved scientists shall have the right to be the first to get the experiments done and publish their results.
For this reason, I can’t go into more detail about why we are specifically looking for penile insensitivity as our tissue for examination. Let me just say that variability in insensitivity can be perfectly explained with the underlying theory. We could have just as well have taken prostate or some other tissue. The reason why we picked penile tissue is because we feel to have a good chance to find what we are looking for there and because we have readily available reference material from unaffected, healthy men. Many factors were taken into consideration when choosing the tissue type.
[Size=4]We currently only need one more guy to join in on the planned July 7th biopsy date.[/size]
If we can get one more guy, we can get the core work done by September of this year. If not, its going to be later or next year. So it’s really up to you guys now. And people needn’t be worried that their penis will get destroyed in the process. We are talking about a miniature, minimally invasive biopsy. I am glad to further explain this by pm or even Skype, for those who are seriously considering contributing to this effort.
Looking forward to hearing from you.
Awor, if the theory proves to be correct:
- Would it mean that the AR-signaling is affected in all parts of the body? Or could it be that only some parts are affected (e.g. sexual and mental functioning) whereas others are not affected (e.g. muscle cell generation)?
- Do you think there is a chance for a cure or therapy to improve our condition?
The presumed mechanism involved varies from individual to individual and from cell type to cell type. So yes, this is possible to have the variation you describe.
We can start thinking about a cure once we do these experiments and hopefully understand the problem better. We see some potential targets, and there are substances out there that are candidates for these targets, but we first need to understand the problem at the level of detail that we are envisioning. You need to understand the problem first before you can solve it. The reason why we are not having more general success with therapies so far is because people are only going after the symptoms (such as dis balanced hormones) without understanding the root cause (i.e. why are these hormones imbalanced in the first place, why are people not reacting normally to androgen supplementation, etc.).
Awor, Just a thought: is there any way PFS guys with foreskins who couldn’t make the trip could have a biopsy done locally and ship it to you?
I appreciate the work of those involved in the proposed study and wish you much success.
Since funds are limited, to subject a hypothesis to scrutiny (scientific, layman, whatever) before launching a study is not unwise. Though I presume this was ably done by the members of the consortium, I don’t believe scientists would be upset by differences of opinion. The clash of conflicting ideas often clarifies thought and leads one closer to the truth.
Shall we label you “not rational” since you are on the forum too? You’ve just reduced the thoughts and observations of this forum’s membership to rubbish. And you think you’re helping the cause?
There is insufficient detail for anyone to seriously question or support the study. That said, the whole “let’s banish all dissenting thinkers” is a scary notion.
I would if i could. I am a student so have no money and can’'t miss any time here due to medical school commitments.
Awor only needs ONE more.
C’mon folks!! This is the time if there ever was one!
thanks to all of the people who have not given up and worked hard to help themselves and thousands of others! without men such as these i would have given up all hope. if there is any way to put forward money I think that many members would be interested. many of us are spending thousands of dollars on medication and doctors and that is really hurting us, but if we could put this cash toward a common goal it could do some could. just my thoughts.
I am european with this side effect. I am however curcumsied. Can i go?
if not @19 how much does it cost - I will fund/part fund it for you to go. What are the costs?
out of interest why must you be NOT circumcised. All my penis is numb so this doesnt just effect the foreskin?
If necessary, would it be worth sending a mass e-mail detailing the prerequisites for the study to all members who provided addresses?
I bet there’s quite a few guys who were once active on the forum who have been keeping to themselves lately, not logging in often, and just waiting for news of an opportunity like this.
Will any of the studies in this project be open to those of us who took dutasteride, isotretinoin, or saw palmetto?
I understand this is a post finasteride syndrome study, but figured it wouldn’t hurt to ask if the rest of us could possibly contribute in any way.