studies are full up, so now we wait.
Your posts donât scare me (at least not anymore). I donât take your posts seriously. You are an emotional guy who uses this forum to vent. pvdl and I are trying to draw your attention to the possible ramifications of doing this.
From my own research and experience with the disease, after doing the math, neurological damage is the last thing Iâd consider. Neurological dysfunction, on the other hand, seems likely, which is why I was so glad to learn that a very competent neuro team has been employed in Italy.
Lets try to be positive. It almost does seem like you attempt to spread hysteria because you want others to be as miserable as you.
edit: I have said on here before that my PFS symptoms are 100% identical to the sides I experienced on the drug. They resolved for 6 weeks before my crash. Thatâs probably the biggest reason why I canât believe that it isnât metabolic. In my case, PFS is mimicking continued fin use.
PLVD, Sexual dysfunction is a very narrow aspect of this. In fact I would argue that it has little relevance. Its just one thing that people notice and focus on. Look at Danâs posts. He noticed changes to his brain chemistry before ED. He did not commit suicide because of ED. He did it because he could not function in his job/life anymore. Now did he seek medical attention? Or did he listen to people saying nothing can help you? Go to the study try noting. Because thatâs exactly what he did. You will not get donations from dead people. Seeking help and doing studies shouldnât be seen as mutually exclusive if the end goal is fixing this. I can see why these initial studies are so limited but I expect to see them be more inclusive after this.
My opinion that this is neurological is no different then Awor saying its genetic or epigenetic. I would argue its more neurological and thatâs why we see the random stories of people getting better/worse with no correlation to actions taken and the sudden nature of the recovery. If you believe the people that say they suddenly had a week or so of complete reversal⌠That phenomenon is also seen in other neurological disorders.
Your welcome to your own opinions. I still think you should not tell people to do noting. What if they have complications beyond PFS and decide to not seek medical help because of you? The fact that I think its neurological has not stopped me from trying things to survive this. I am no where near perfect or recovered but I am better off for not giving up on seeking medical attention. Mainly do to encouragement from members here that I have been in contact directly. People that would probably not get along with each other and have different opinions but did see improvements from trying some things.
You get very upset at people from textual posts that can easily be taken out of context. I do it to, so not judging. For example I was not very nice to your brother when he kept complaining about his jaw. My entire body and brain were destroyed so hearing someone complain about their jaw sounded trivial to me. He was/is most likely dealing with allot more than jaw issues. Emotionally the jaw was bothering him the most at that time. As far as my emotional posts go⌠We are all going through something that few people in history will ever experience. We should all have a little grace with one another.
Many people experience extreme medical conditions. In this aspect we are nothing special. The specifics of our condition are irrelevant if you want to compare the suffering induced.
I think you missed my main point. You were saying its neurological (assumption) and that it will never be fixed, that we are in denial if we suggest that science can solve this. I think your rants are not helping.
I am saying stay cool headed. I dont think medical help is available, and I dont think these doctors have any success thus far. Therefore I advocate the donations and studies part.
Pls just refrain from your emotional outbursts and doom talk. It really is not getting us anywhere. To be honest, I didnt even get the point of that emotional outburst. We are in denial because we are not certain that its neurological and that science cant fix this? Sounds highly irrational to me to be honest.
And by the way: Extreme facial changes like the ones my brother is experiencing are enormously distressing. Its no coincidence that depressed guy said that one of his main complaints besides vision issues is collagen loss, and that getting rid of this is more important to him than the sexual sides. Now imagine you have collagen loss, extreme bone loss and a totally different run down facial structure.
Everything else except the most extreme mental fog pales in comparison to this side, let me tell you. The emotional impact this has might be hard to imagine, unless you experience such a extreme facial change yourself. For my brother its like seeing a different person in the mirror each morning.
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Your good buddy finatruth said all this before ANY science on PFS had emerged, I employ you to trust him:
I said there has been a change in the brain in the ratio of profesterone to estrogen AND Italian studies found significantly higher levels of estrogen in the brain
Your good friend was the ONLY one ever on this site to say that there has been change in the metabolism of the brain, causing excitibility in the prefrontal cortex. Guess what? Researchers now believe we have an altered change in brain metabolism which is their leading theory.
I fought countless people saying its neuro hormonal and not hormones affecting neurological function. Research is showing that.
I said itâs an extemely slow self limiting syndrome- I am correct about that
Now I am asking you to trust me again, when I say, this is NOT permanent. Now researchers seem to be concluding the same.
I donât know about you guys, but if I were me, I would be listening to every word I say
Youâre such an egocentric tosser.
You havenât been right about anything, and I note that you fail to mention all the the other dumb theories youâve promoted since being here.
PFS is 100% androgen deprivation. This naturally leads to an increase in estrogenic symptoms. All our symptoms mimic those of men who undergo castration treatments to reduce their testosterone to zero or near zero to prevent the spread of prostate cancer.
Any dimwitted theory that proscribes the various symptoms of PFS to adrenal fatigue, progesterone or âneurological damageâ in 2015 is just borne of ignorance and lack of knowledge. You think those make your dick and balls smaller, breast growth, beard growth slow and muscles waste? Maybe you should look into the role of testosterone in the male physiology a bit more.
The only men on earth who have symptoms the same as full on PFS are those who have been on drugs like Lupron and have no functioning testosterone. Have a look at these guysâ side effects askapatient.com/viewrating.a ⌠N&sort=age
Hopefully when the Harvard study appears all this nonsense will finally be put to bed. I would say I agree this is not permanent though, or at least only is as things stand just now where it is almost completely unacknowledged in the medical world and thus no attempts have been made to address what is going on or how to reverse it. The most we can do to counter that just now is donating and participating in studies which prove its existence. If you want to try and fix symptoms yourself then fine but DONâT then be so dumb and arrogant as to belittle the only work being done by qualified scientists to discover what is going on. Constantly moaning on here that weâre all fucked forever is defeatist and ignorant, and potentially damaging to newer and more vulnerable victims.
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Where is the research information shared? Iâd be keen to see what initial insights are coming out of the italian study.
Hi Luckfax!!! I missed you
Flaccid shrinkage and shrunken testicles are linked to neuro disorders like CPPS. The others would be caused by a downstream hormonal disruption (or at least thatâs the idea). I also read about guys who took ecstasy and got similar symptoms to us.
Not saying it isnât androgen insensitivity, but it isnât my favourite theory. I havenât experienced the muscle wastage or slow beard growth.
From what I understand, the Italian scientists think this is a problem of nervous system metabolism, i.e. that 5 alpha reductase is not working in the central (and possibly peripheral) nervous system.
Do some research and you will see that 5 alpha reductase is present in the central and peripheral nervous system and converts testosterone into its metabolites in the nerves. There is aromatase enzyme in the nervous system as well.
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I dont want to nitpick, and you can think whatever you like, however unless you have an extensive medical background and are part of the research team investigating this scientifically, you are not even able to have a âfavourite theoryâ.
I can, itâs just admittedly based on very limited information. Like picking your favourite of 3 women based on the sound of their voices.
So little information that it is moronic to even have an opinion 
. Lol.
Have a nice day.
That analogy was purposely exaggerated to acknowledge that weâre limited in data. However, I definitely have enough information to form some loose opinions.
As I said, PFS is mimicking continued fin use in my case. So, picking favourites, I will weed out anything that doesnât align with that.
With regard to androgen insensitivity, to the best of my knowledge, there are no documented cases of it occurring ever. However, 5ar genes have been documented to become methylated. In addition, we have an actual study that shows decreased neurosteroid levels in PFS patients. Small sample size or not, itâs enough to form favourites with.
bens, you are new to recovery, you have to wait about 2-3 years to see the difference
Just saw my endo again and he has said my adrenals are really sluggish and it is most likely due to a problem with the HPA axis but apart from that wasnât sure what steps I should be taking next.
Can anyone advise what tests I should carry out next?
My thyroid was fine and the only other hormone out of range was my SHBGâŚ
The vast majority of symptoms point to autonomic nervous system malfunction. Even if you just want to focus on sexual issues. Many here can get an erection with stimulation⌠Well guess what controls spontaneous erections⌠autonomic nervous system. (See link to book below)
I found Michaelâs recent podcast quite interesting⌠His sweating troubles are not a common issue shared among us. I think most of us donât sweat much. Regardless what explains the malfunction? The autonomic nervous system controls sweating. The autonomic nervous system controls digestion. Many of us have digestion issues.
It explains the fatigue issues. http://www.ncbi.nlm.nih.gov/pubmed/24662556
It explains the variations in symptoms among sufferers and why some get better with time and some do not. It explains why doctors cant help much. It explains why hormone levels have little positive effect. It explains why some have normal hormone levels and some do not.
http://www.webmd.com/brain/nerve-pain-and-nerve-damage-symptoms-and-causes
Autonomic nerve damage may produce the following symptoms:
â˘Inability to sense chest pain, such as angina or heart attack
â˘Too much sweating (known as hyperhidrosis) or too little sweating (known as anhidrosis)
â˘Lightheadedness
â˘Dry eyes and mouth
â˘Constipation
â˘Bladder dysfunction
â˘Sexual dysfunction
Damage to motor nerves may produce the following symptoms:
â˘Weakness
â˘Muscle atrophy
â˘Twitching, also known as fasciculation
â˘Paralysis
Sensory nerve damage may produce the following symptoms:
â˘Pain
â˘Sensitivity
â˘Numbness
â˘Tingling or prickling
â˘Burning
â˘Problems with positional awareness
Also for those that got the short symptom reprieve after quitting the drug⌠There is a phenomenon called Delayed Neurological Syndrome. I think this is would be similar⌠You recover for a short period just to relapse with just as bad or worse issues.
@mcibofh +1
The acupuncturist I saw end of the last year said my autonomic nervous system is âfucked upâ (she didnât literally say that but thatâs what she meant)
Blurry Vision is also caused by autonomic nervous system issues.
Even Tinnitus can be caused by autonomic nervous system issues.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2686891/
[urlhttp://www.merckmanuals.com/home/brain_spinal_cord_and_nerve_disorders/autonomic_nervous_system_disorders/pure_autonomic_failure.html[/url]
Yea it really sucks but what else can cause so many problems for each of us. Problems that last years⌠It would be nice to be able to prove it. No company should ever be able to market a drug for cosmetic purposes that has the capability of doing this.
Thanks for drawing attention to this, mcibofh.
Iâve done a very quick google search myself regarding other symptoms, the first of these being bone loss, which Iâve experienced in my jaw with some teeth now loose. Thinking also of peripheral pain in the form of face ache and people like notna who have experienced profound change to facial bone structure and others with dental problems and aches and pains.
Autonomic control of bone formation: its clinical relevance.
(ncbi.nlm.nih.gov/pubmed/24095124)
Subcutaneous fat loss and fat redistribution:
Is lipodystrophy caused by the action of antiretroviral drugs in the brain?
"The group of doctors from Amsterdam and Leiden suggest that redistribution of body fat could be caused by the effects of antiretroviral drugs on the autonomic nervous system, the subconscious network of neurones that controls the activity of the organs and tissues.
They propose that HAART affects the brain regions controlling the amount of subcutaneous fat in opposite ways to the regions controlling the fat tissue around the internal organs.
Their hypothesis states that the drugs cause the âsympatheticâ component of the autonomic regions controlling the subcutaneous fat tissue to become more active than the âparasympatheticâ component. This leads to a loss of fat from beneath the skin. Conversely, the build-up of fat around the internal organs is a result of a greater increase in the activity of the âparasympatheticâ component of the regions controlling the visceral adipose tissue."