Kan's story - One of the most severe stories of PFS

#4

The fatigue improved, i feel more energetic than i was at the start af all this. But i still look very skinny and no matter what i eat, my weight remains low. I still have dry skin too.

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#5

I forgot to say that at the begin of all my problems i tried two antidepressants (first sertraline and later clomipramine), and i stopped using both of them at the first week of use, because they worsened my side effects.

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#6

I’ll ty to explain my PFS journey during the last 8 years, because i think the most severe cases are the ones that give us more information about the whole syndrome.
I will forget about many details, but at least I’ll try to explain the better I can:

2011: I was in University, and I was recommended to take during six months Zoloft (an SSRI), to counter the side effects of Ritalin (i took ritalin every now and then).

In the past I already had tried Zoloft two times (six months each time, also to counter ritalin side effects).

Neither of the first two times I took Zoloft happened anything after stoping it, appart from having a little bit less of libido. Something that didn’t worry me much. No sexual dysfunction or anything else.

So in 2011 I was taking Zoloft and at some point I was prescribed Propecia. I started taking propecia and at day 5 or 6 I noticed that I had erectile dysfunction, but I kept taking it for 20 more days and then I stopped it.

When I stopped finasteride, things went back to normal. But I was still on Zoloft. Then, after aprox one months of stopping Finasteride, I stopped Zoloft.

That’s when my dick went numb, severe sexual dysfunction started and one of my testicles ached for one month, my dick felt lighter. After one month of not seeing improvements, and seeing that the exams were near I started taking ritalin to prepare for the exams and try to forget about everything.

At this moment my dick shrinked horribly, and veins increased. My penile skin got thinner and my perineal area ached and reduced its size.

So I decided to do a doppler of my penis. And it showed fibrosis, microcalcifications and atherosclerosis.

I was so extremely depressed that I tried to put myself on zoloft again, but the reaction was completely different than before propecia. Now I only felt exteme anxiety, so I left it one or two weeks after starting. After stopping Zoloft things got even worse.

So at November of 2011, seeing that things didn’t improve, I decided to try a small dose of GBL as I wanted to try a HDAC inhibitor to see if things got better. After using it I later realized that maybe the dose I took was too big. GBL and GHB can be toxic in high doses.

2012:
During 2012 I started getting better and better. Specially mentally, and a little bit sexually (never recovered size but the function improved, even though I could only have sex with Levitra and only once a week or so, it was better than before).

The thing that changed my situation was masturbation. In 2011 I masturbated at least five times a week. In 2012 I started masturbating once every four-five days. And things got much better.

2013:
At the start of 2013 I left a relationship and I felt really depressed, as I saw that despite having improved during the previous year, it was impossible to keep a relationship. At this point I read in the forum some people claiming that progesterone cream helped them improve their mood.

So in a moment of desperation I tried it just one day.

Things got really bad three weeks later. I started losing muscle everytime I masturbated. Also, at that moment I worked as a waiter, and I had to stop it because my muscles ached a lot after doing my shifts.

My penis was destroyed. It became a complete mess.

Depression became terrible.

During that time I also developed symptoms of multiple chemical sensitivity (problems when smelling paint, etc.). But I’m not sure if this has to do with propecia itself, or the fact that I tried a high dose of GBL, or just predispostion.

Now I’m diagnosed with MCS and Chronic Fatigue Syndrome.

Back to 2013: I spent the whole year trying to survive, while my body continued to lose muscle and depression was unbearable.

I remember that when I took a cold shower my veins in several parts of my body swelled.

2014:
So, after a horrible year, my mind started to feel a litlle better, but I still was losing some muscle.
I had to totally stop masturbating to improve my situation.
I went from wearing L shirts to wearing S shirts. The strange thing is that I wasn’t gaining any fat, so I looked anorexic.

2015:
I mentally felt well, despite being so thin, but I had some worries about where this muscle loss could lead to. If I didn’t masturbate at all I didn’t lose (almost) muscle. But every time I masturbated, I lost some muscle.

I completely stopped masturbating, and it was a good decision (bearing in mind my situation). But after some months, my body decided to start having orgasms itself at night every week or so.

That had the same effects on muscle loss as masturbation (maybe a little less but really similar).

So I was worried again, and I looked for a remedy. I read that ashwaghanda (an herb) helped stop nocturnal orgasms.

So I used it for one day, and I regreted it later. Three weeks after using it, I had an orgasm, and I crashed again. I later realized it was a 5ar inhibitor.

From that moment I started gaining a lot of fat. All the fat that I didn’t gain during my muscle loss started appearing now. I started having man tits, and my skin became super sensitive.

From that moment, everytime I weared tight trousers, I would get a lot of pain in my legs.

During all that time I felt like I was getting ten years older. My skin looked horribly. Also my penis looked terrible.

2016: I started having nerve pains after having anesthesia done.
My doctor says it’s related to MCS, it may be, but who knows.

I moved from a big city to a small town, and some of my symptoms (MCS appart) got better: for example, skin pain

My fat gain seemed to slow down a little. But at that point I had gone from 70 kg to 90 kg. I still think it’s weird that my fat gain slowed when I moved away from the big city, despite eating pretty much the same. Maybe stress played a role, but it certainly started after taking ashwaghanda.

During the rest of 2016 I started having more pains in nerves and muscles, but I managed to have an acceptable life, with all the limitations I had.

2017:
During 2017 I was mentally well, but I still had some pain in my skin, but this may not be related to PFS. I felt pretty well overall.

2018:
Mentally well during 2018, but I had to start working a little harder at the end of the year, and I realized my body couldn’t keep track.

A psychiatrist who is a friend of my family and knew about my story convinced me that it was impossible that ritalin caused the penile shrinkage in 2011… I don’t know why I believed it but I did. Maybe I just wanted to believe him.

So, I tried one pill of ritalin. During the first week I noticed strange things, but I didn’t crash after one week, which is when I masturbated.

My dick shrinked a little bit more, and anxiety and suicidal thoughts appeared.

I also became angry about that decision.

I told my parents, and we started arguing about the impossibility of such thing.

2019:
Some days later my parents forced me to go to a mental ward. They explained the psychiatrist that I was convinced that ritalin shrinked my penis, and that since I took propecia on 2011, I seemed to have trouble with every medication that altered testosterone.

The psychiatrist put me in the mental ward, but my parents almost immediately regreted it after seeing the kind of people that were there, and asked the psychiatrist to let me leave. So I just was two days there.

Too late. I was given an anti-psychotic pill (just one) and was diagnosed with “Hypocondriac Delusional Disorder” or something like that.

One week after taking the antipsychotic I had an orgasm and crashed again.

I’m now getting fatter, have again a severe depression and anxiety, and my penis shrinked a little more. Orgasm makes me have a crazy anxiety and my fat seems to increase everytime I masturbate, specially in breasts. I now weight about 110kg with almost no muscle.

I have a lot of muscle weakness, but at this point I’m not even sure if it’s because of all the muscle loss, because of this crash, or because of the chronic fatigue syndrome I was diagnosed with.

I want to make a penis doppler during the next days, to prove that my penis has worsened after taking this medication.

For me it would be supper important to have a prove that explained most of what has happened. If I could check my androgen receptors I would do it immediately, I don’t even think that is possible if you’re not part of a study. And i wasn’t elegible for previous studies.

I think my case gives many clues about the way PFS works.

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#7

Man I am so sorry, I feel for you. Your sides are similar to mine shrinkage, fatigue ect… that’s horrible how the docs don’t believe you, I’m hoping the upcoming Baylor study will show somthing so you can prove those doctors wrong. Hang in brother!

Have you gotten any recent blood work done?

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#8

is your cognitive impairment away ?

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#9

Hi @kan,

Thanks for sharing this update. I am sorry to read your story. I also unfortunately have been devastated neurologically and physically by this condition.

Yes, I would agree - the severe end of the spectrum often gives great insight into diseases with variable phenotypes in general. This is quite evident in trinucleotide repeat disorders which feature the genetic phenomenon of anticipation. Myotonic dystrophy (DM1) is a very interesting example.

Firstly, have you shown your parents any recent publications on PFS? Recently there have been a few good literature reviews with clear conclusions regarding the existence of the disease, notably Khera and Traish’s. If you would like I can provide links to the abstracts.

Secondly, have you received your invite via email to participate in our survey? It is a very significant project and it would be great if you could take it. You have received an invite via email, but if you cannot find it please follow the steps in the first section of the FAQ topic and let me know when you have done so. I’ll issue a reminder.

Lastly, do you have your medical findings well documented?

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#10

Hi @axolotl, I haven’t showed my parents the recent literature reviews, I would appreciate if you sent me the links. Thanks.

In the past I showed what was published then, but they are very skeptical.

I haven’t received the email to participate in the survey, maybe because I have hotmail, I think there were some problems in the last emails, but I can’t recall it well. I’ll follow the instructions of the FAQ topic.

Regarding medical findings I have the results of the doppler that I did just some weeks/months after stopping finasteride and zoloft. The images clearly show fibrosis, etc. At that moment the only thing that I had tried after the first crash was ritalin.

I also have the report from the doctor who did the doppler, he talks about fibrosis, microcalcifications, and significant erectile dysfunction as a consequence of penile atheroesclerosis. I will try to upload it soon.

I did also a doppler showing a small calcification in my prostate, but the doctor told me not to worry about that. I still have the results.

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#11

I think you would stand to benefit from losing weight. At least to 70 kg. I think it will help you so much.

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#12

Excellent, thank you - let me know when you’ve followed the instructions and i’ll send a reminder invite for the survey via the system.

Have you had a creatine kinase serum blood test during a period of muscle loss, or had at any point recently an electromyographic test (EMG) noting any denervation?

Please do stay in touch. Below are two literature reviews as requested:

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Insomnia and Brain Spasms
#13

Thanks for the links @axolotl.

I’ve just followed the instructions of the FAQ topic and confirmed the subscription.

I haven’t done the tests you mention, but I will probably do them as soon as I can.

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#14

I still haven’t received any e-mail regarding the survey.

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#15

Thank you for letting me know - have sent you a PM.

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#16

I have a visit with my doctor next week to talk about this.

Just curious, has any member of the forum with muscle wastage done these tests?

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#17

I’m interested in this also, and I am very sorry to hear about your story Kan. I have been significantly affected by this drug as well, physically and mentally. I am 5 months since taking a single pill and still have hopes that this is not permanent.

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#18

If you don’t take anything you will improve at about 10-14 months after stoping finasteride, especially regarding mental sides.

If you start trying drugs to improve your situation, you will risk worsening even more. Especially if you take drugs that affect testosterone in some way.

At least, that has been my experience. Take care.

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#19

I haven’t taken anything to try and re-balance my hormones, no antidepressants or anything for cognitive symptoms. By improvement, are you saying that your muscle wastage, erectile dysfunction, any cognitive issues were not permanent? What about difficulties with sleep, like not getting restorative, deep sleep? Any input on this is much appreciated man.

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#20

Erectile dysfunction was permanent for me after my second crash, but cognitive function, muscle wastage and sleep improved (but have now worsened again after this last crash).

All my crashes have been a consequence of different drugs.

For me the most important thing is being mentally well. Before this crash, since my mind was back to “normal”, I could have an acceptable life because I wasn’t depressed anymore.

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#21

What were some of the drugs which caused you to crash? I read where you also experienced crashes after ejaculating, or having an orgasm. Does this still occur? I have noticed that after I have sex, I am significantly more disoriented and have worse brain fog. I am just really hoping, at the very least, my sleep and muscle wastage improve. As of now, do you still have any cognitive issues? Any visual/perceptual issues or any haziness? Are you able to get deep rest?

Thank you for the responses.

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#22

Orgasm makes things worse, but I wouldn’t call that a crash, because it is temporary.

I have only crashed after taking drugs (for me the crash usually happens in the first orgasm after taking the drug, but I don’t attribute the crash to the orgasm but to the drug)

The drugs that have made me crash are all quoted in my story (antidepressants, progesterone, etc.).

I am having some cognitive problems but you need to bear in mind that I crashed just three months ago. Before that, I had no depression, no anxiety, and I slept well. These are the things that improve the most with time.

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#23

So your main advice at this point is to refrain from taking any type of hormone-altering drug and just wait? What about diet, were you sensitive to any foods, did you try juice feasting, fasting, etc? What has been your experience with exercising, such as lifting weights or running?

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