The DOUBT - real concern? red herring? Definitely looking for support

Symptoms Neurological
#1

hello guys,

this is my first post here (i suppose, as my memory/recall looks impaired).
Before talking about the title, a little preamble is necessary.

I started Propecia in 2004 and i quit this year, on february.
My symptoms were: depression, anxiety, stress, insomnia, obsessiveness, tinnitus, weakness, tremors, suicidal ideation (i went, by myself, to a hospital asking them to save me from suicide).
I didn’t know if it was propecia causing me so much trouble or if i was really gone that crazy by myself but i thought that quitting propecia was necessary, anyway.
Right after stopping the medication i got some fine scratches under my eyes, thinning of skin, fat loss and this was, i assumed, the proof that i was not that crazy by myself, i thought that it was propecia which caused me so much insanity.
I started, and just partially, the cdnuts protocol and i was doing fine, everyone said i was and looked a lot better, i have no more tremors or tinnitus, my anxiety lowered a little, depression seemed gone since i had another depression attack on saturday (and still going on).
My psychiatrist says that my problems are psychological, my family doctor says the same (you know the mantra “is all in your head, buddy”) but, how to explain this insomnia that lasts from one year? How to explain the fat loss under my eyes right after stopping the drug?

Now, to be fair, i’ve always been a little neurotic, even before propecia. I remember i had anxiety, for example, but it was related to stressful situations while now i can’t copy with anything, i feel easily stressed.
It’s like i have always a fear-like behaviour, now.

In these situations, the doubt comes with all his questions: what if your doctors are right? what if you’re just completely crazy? what if you are just hypocondriac or obsessive? what if this PFS is just an excuse made by yourself to explain your unexplainable craziness?

Has this ever happened even to you, guys? Have you ever thought you are just crazy, even for a second?
And yet, that you know, is it normal to have these terrible relapses while recovering from propecia?
Sometimes the doubt haunts me, expecially when doctors say it’s all in my mind.
Following the doubt, today i’ve decided to see a psychologist but right after the phone call i wondered “what the hell a psychologist can do… he could never give me back my neurosteroids… Am i wasting time and money?”
And another anxiety/panic attack arrives! It’s incredible how much fear i have for no reason (and this, maybe, could be another proof that is the syndrome… or not?).

You know, the PFS is not diagnosable…

I wanted to open my emotions and my mind to you, to share my thoughts.
This really is a shade-of-gray situation, sometimes.

Thank you so much guys.

#2

Your doctors are retarded and wrong, stop seeing them. There are plenty of sources to prove PFS exists.

Find a new doctor from this list that won’t call you crazy, scroll down.

http://www.pfsfoundation.org/resources/

#3

Hello and thank you for the answer.
Everything is difficult since these symptoms can have other causes and looking back at my history.
I’m so scared to death that i think that, maybe, i’m just crazy.
Did you read all? Are those symptoms (including being so fearful and obsessive) ever reported?

And… did you ever think you are totally crazy?

#4

If you google finasteride and whatever problem you have you’ll see other ppl have complained about it too.

#5

i forgot to wite that all my labs are fine… just the growth hormone is a little bit high

#6

Pfs can be diagnosed by certain docs. Even in Europe. Docs are telling you that BS cause they fear to say the truth. They are just docs.

#7

Hey Sanic,

Absolutely not for a second. PFS affects people to very variable degrees and many of those are physical. For six years after trying it I developed digestive problems only so I never connected it to the pills, but then I took fin again, had a bad reaction, recovered six hours later and crashed two days later. Sudden total insomnia, psychosis, loss of memory, incredible anxiety (I was in a constant panic attack that would increase if I looked at a screen or window), complete anhedonia. I had never had a single mental symptom before in my life, except a slight compulsion to pull my facial hair out when i was concentrating. I became totally derealised to the point I could not cook for months and my friend had to look after me. My digestion broke down and I lost 4 kilos as everything went straight through me. I couldn’t leave bed with the prostate pain for months and have suffered significant and upsetting personal physical damage, and sexually am non functional. Veins emerged all over my body, my skin has aged (i have the lines under eyes you report) and is very much drier, as is my facial hair. That’s nowhere near all of it. I had before and after hormones and over the months following my crash my entire hormonal profile changed, including a doubling of testosterone and extremely low LH/FSH. I have had a substantial improvement in clarity over the past year, but very little else. PFS hit me like a bolt of lightening and the physical effects particularly worsened over time.

I am on the extreme end of PFS cases after being on the very mild end for years, but many of us have muscle wasting, metabolic changes and changes to our genitalia that are not related to a psychiatric problem. We are currently working on a project to better characterise the wide range of outcomes and symptoms suffered by those with PFS at the moment, as it’s very important and often the community are not even fully aware that cases differ so vastly in the severity and impact on various bodily systems.

The most important scientific findings thus far are a significant over-expression of the androgen receptor in penile tissues of PFS patients suffering sexual problems (double vs healthy controls). Furthermore, I’m sure you’re aware it was found that many neuroactive steroids are altered in PFS patients cerebrospinal fluid, along with evidence of pudendal neuropathy in the absence of any signs or findings of toxicology to explain it. Research is ongoing and I am cautiously optimistic we will have a much greater scientific picture of what’s going on in the not too distant future.

Although thankfully you’ve (well, by the scale of this thing) got off somewhat lightly to be in good physical shape, it’s absolute not in your head. Unfortunately for us, this situation is highly unusual and doctors have not come across anything like it before, therefore as patients we are often left considerably unsupported.

All the best and I hope you continue to experience improvement.

2 Likes
#8

which doctors can diagnose? do you have names?

#9

Hi Axo,
did you try fasting? I hear many guys who get a lot better after fasting?
Thank you for the answer btw.