New here! Help please!

Okay, I understand at least half of that diagnosis.

Anyway: When was this diag done?
Have you shown that MRI to a neuro? Without mentioning the diag? Why did you do that MRI?

Anyway, a normal 1.5 Tesla MRI doesn’t show enough. 3 Tesla would be fine. Or as I mentioned a MRN. Then you even know what nerves are impaired / inflamed.

You could do a MRN of the pelvic floor and back (CNS).
If you like, send me your MRI via mail.
Anyway:
What are your next steps now? What do you want to try? Just this way you will get better or understand your individual problem.
Lots of ppl here are guessing cause they just do some blood tests. And those ppl with comprehensive testing got cured cause they u derstood that pfs is not a fucking disease rather a collection of different symptoms and coexistent diseases. Here we are.

I suggest you pm me. This log is too huge. To complex. I will answer your questions. Best

New Blood results are in:

Total T 460
Free T 2.6% (1.5-2.9)
SHBG 19 (18-54)
DHEA-S 12.5 (4.3-12.2) **********
Insulin 10.8 (2.6-24.9)
Fasting Glucose 4.7 (<7,0)

I just want to state before anyone reads this I have no history of use of Propecia/Finasteride/Accutane or any SSRI’s. In May 2016 I started my first job on a construction site, where I was driving a backhoe and picking up garbage and filling the backhoe with , garbage/plastic/metals. I was also sweeping the insides of the house from saw dust etc. During this time I was also on a very strict 1500 calorie diet and was doing excessive fasting periods and overtraining. I got really skinny and stopped my bodybuilding training in an effort to lose the bodybuilding appearance in order to pursue profession soccer career. Anyways I noticed in june that something was different but its like I was in such a confused state I continued my job and didn’t understand what was going on.

One day sitting on the toilet in July/August I noticed that I did not have any morning wood, as a matter of fact I started think I haven’t had morning wood in weeks! Nor did I have any spontaneous erections? or libido. I put this down to my diet and busy schedule and continued on. I left Canada and moved back to Europe in September and pretty much stayed in the house all depressed even though I was getting leaner then ever (honestly like 7 percent body fat ripped) December came and I said that this is not normal anymore as my face become yellow, and I have no sex drive, and I also began to leak urine!

From Jan to March 2017 I gained all my normal weight back and an extra 2-3 kgs. My symptoms did not go away. They include the following: No libido , no erections, genitals feel completely numb! I feel like my whole body is numb to pleasure, genitals go from either feeling numb or like RUBBER! I do not feel anything when I orgasm it does not shoot out like before it just oozes out and feels really delayed. My scrotum is tight, and my testicles feel hard and dried out of sperm. No matter how much I sweat in the gym my armpits remain completely dry they do not produce any sweat nor do my genitals! This is all abnormal for me and I have been dealing with this for the last 2 years and im in absolute shock. I have been to endos, neurologists, neurosurgeons, and urologists and nobody knows wtf it is.

They reccommended I see a psychologist or a sex therapist! When I googled my symptoms its sounded like Low T, so I thought it was that since I went on a diet. Doc says my T is fine at 450-600 it varies. However when I asked Chrisler last week what can cause numb genitals he said low DHT. I got it checked out and it came back at 220 (300-850)

All the doctors here in Croatia are saying DHT is irrelevant. My hormones are fine. Its all in my head. I also have a minor disc herniation and spina bifida. Leg EMG showed severe loss of motor neurons in left and right foot. I also have a pain in my right testicle , right pelvis area. Almost like in the hernia area. Ultrasound came back clear! Penis feels like it is very light and filled with air, and urine stuck in urethra 24/7!!! Im only 24 ffs

For me and I believe most of you LIBIDO is the main driving force in life. It is the reason for your existence and everything is centered around it. I lost all my aggression and quit playing soccer which I can never imagine I would do , especially because I was getting soo close. I also quit my job a few months ago, because stupid doctors were sending me for all these blood tests (of course all to be done seperately, on different days) causing me to take time off work and the boss getting frusturated!

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Hi @joey10. Thanks for sharing and I’m sorry you’re experiencing this.

We are soon (hopefully in a month or so) going to be launching a large survey for sufferers of this syndrome. If you could, it would be great if you could take this survey noting your calorie deficit and fasting where normally one would select what drugs/substances used, along with your clinical findings where appropriate in the survey.

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I forgot to mention that I had a fungal rash all over my thighs and buttocks/ inner arms ever since I was a child. The doctor prescribed me I believe it was called “HYDROCORTISONE CREAM” to be applied topically to the rash! The cream never seemed to help much but In march 2016 2 months before all these symptoms occured, I became allergic to eggs, my face and neck would get red blotches and flare up, itchy throat, that went away after 4-5 hours only to come back after eating them again. I have been eating eggs for breakfast my whole life. The next day my soccer team went on pre season training 4-5 hours away from home and I ate eggs at team hotel and it happened again! When I returned home it happened again also. I stopped eating eggs for 3 weeks , and then began again, and it never happened again! However 2-3 months later I have all these symptoms!

im reading that certain antifungal drugs can cause these symptoms , specifically “ketoconazole” will be calling my doctors office for a history of drugs I have been described. The packaging looks the exact same as I remember, however there are a few different names with this white and yellow packaging!

Ketoconazole has more than one form of antiandrogen action and is often indicated for conditions including androgenic alopecia. Were you using this at the time?

I know it was an anti fungal cream prescribed for a fungal rash on the thighs/buttocks/inner thighs. I can’t remember the name of the cream that is why I will be contacting my doctor to ask him the name of it. Something tells me it was Hydrocortisone cream but I reall can’t recall! I will let you know soon

Brain/pituitary MRI tommorow, will keep everyone updated? Does it sound like I have PFS?? I have been dealing with these symptoms since June 2016!! To make matters worse I moved back to Europe and dealing with doctors here is a pain in the ass, can’t imagine they would be much better in Canada but atleast I could look them straight in the eye and tell them exactly wtf is going on…

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I visit Monday, I keep you updated.
Let me know how you go

I think it has to do with DHT… It feels like the prostate is shrunken and if its shrunk its like blood flow cannot stay in the penis. If it is normal or larger, the blood supply will stay in the erection?

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WTF??? PFS from Zinc???

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Also one other guy got PFS after 10 days taking 50mg zinc. But for some reason I cant find the thread anymore.

got some more blood tests…

Glucose 1 5.7 mmol/l
Glucose 2 6.8 mmol/l
24H Urine Cortisol 77 nmol/ (12-486)
TSH 2.320 (0.35-4,94)
t4 101 (63-151)
Anti-tpo <0.5 (- 5,6)
Anti-tg 1 (-4.1)
LH 4.5 (1.7-8.6)
FSH 3.2 (1.5-12.4)
Total T 21.2 (8.6-29)
SHBG 28 (18-54)
Prolactin 285 (86-324)
ACTH 8.1 (1.6-13.9)
Cortisol 486 (133-537)
Growth Hormone <0.050 (-10)
IGF-I 216 (115-355)
Insulin I 15.7 miu/l
insulin II 92.1 miu/l

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All test Ok :frowning_face::frowning_face::frowning_face:

dht 220 (300-850) …

Got my brain and pituitary mri results back… all is fine accept I have a discrete linear ishemic gliotic lesion.

i have an appointment december 5th with a 2nd neurosurgeon if he can not tell me wtf is going in , I will be looking to start a group that is willing to protest in front of the motherfucking whitehouse. I dont see what the hell the point of is living with this garbage

What will you v protesting? What will neurosegion be looking for if your mri came back clean?

I have a back mri, spina bifida l5-s1 as well as a minor herniation l1-l2