Thank you for the kind messages and checking in @Bruce and @Poisonpalmetto . My apologies for not checking in again sooner, I’ve just been following the “stay away from the forum” advice. I just recently passed the six month mark and would like to share where I’m at.
Before proceeding though, I want to answer @Poisonpalmetto 's question. This is the closest version of the NOW product I can find online: https://www.amazon.com/NOW-Supplements-Pygeum-Palmetto-Softgels/dp/B0013OSQ3A
The version I took was slightly different. It contained 320mg of Saw Palmetto Extract, 80mg of Pygeum Extract, and 1.5g of Pumpkin Seed Oil. It’s etched in my brain. I took 3 doses. Morning and night of April 3rd 2021 and morning of April 4th 2021. I felt a sharp pain in my penis an hour or so after taking that last dose, heard my stomach grumbling and honestly felt like I was a spectator in my own life. Out of body, like high. Stopped immediately, but of course too late.
Now, I should be clear my symptoms started before this. Even my hair loss (which was pharma induced). You see, I went to the Clinique counter in August 2020, I mean dermatologist, and said I’m starting to get some pretty deep wrinkles, probably should have worn sunscreen better. Do you have a moisturizer you recommend? He prescribed me Tretinoin Cream (0.025%). Now, I’m usually very skeptical, but was dumb and didn’t even ask why I was given a prescription for something so minuscule! I used that for just under two weeks and my skin got very red and dry, so I stopped. He said “yeah, some people have that reaction”. So, I said I’ll just deal, not worth it. Two months later (October 2020), my hair starts falling out like crazy. Stupidly, I go to the same doctor, he says “Telogen Effluvium” and best to just wait it out and de-stress. He said I seemed like I was stressed out. No shit, my hair is falling out, I wasn’t stressed out before then. The stress is only there now because of the hair fall. So, I wait until March 2021 to see him again. Now, in that time period, I start to develop some tooth pain and gum recession. I also get more vascular (despite not working out as much as I’d like). When I do try to workout, I tear a muscle attached to the rotator cuff. I forget which one, but it doesn’t heal on it’s own, until I’m given a steroid shot and physical therapy. I assume wow, guess I’m starting to suddenly age. That must be it. So, now it’s March 2021, and I return to the dermatologist. Hair fall hasn’t stopped, it’s actually worse. He prescribes me topical Clobetasol. I try it once and I get a weird tingling feeling in my penis. I never use it again. He says try Rogaine. I do and again get that weird feeling, so I stop after two days. Now, he suggests Propecia. I google that and go no way, given all that’s been going on, I don’t want to risk it. I ask him is there something natural that I can take, I seem to be having reactions to drugs. Oh he says, I highly recommend Saw Palmetto. Stupid me goes to health food store and apparently finds super charged version that I cannot even find anymore to show you.
Here’s the real kicker though, after the Saw Palmetto Extract pills, my hair loss only got worse. Initially, it was just the top of my head, now it’s the sides and back, and body hair as well. Especially the stomach, chest and genital area. So, it did the opposite, I could almost bear this better if at least my hair was coming back. You know, at least it did what it promised, but no, can’t even get that.
Fast forward to today, I will address changes below (I’ll start with the good news):
No longer impotent, can get an erection (full size) and generally as hard or as near hard as before. Ejaculations sometimes great/normal, but usually low volume, not much distance and generally have a yellow tinge (but not as bad as a few months ago). Seems to be progressing and certainly feels great again, I’d say say 90% of sensitivity is back, some days feels like 100%. Filled with sexual thoughts again and can be visually aroused (without physical manipulation) about 50% of the time. Flaccid size is still generally bad. However, I’ll have random moments every couple of days where it returns to normal size or near normal. Will usually last an hour or so to. Most of the time, the “structure” still appears off/“spongy”, but I’ve definitely had a few times it looked like “the good old days”. The wrinkles are still there too. However, they disappear or are hard to see when erect.
Testicles seem to vary in size and strength each day. Sometimes they are small and can be “compressed”/pushed in, other days they are normal size and “solid” again. Scrotum line comes and goes (as weird as that sounds). Sometimes they appear to be moving, it’s incredibly scary and weird. Scrotum and Perineum skin very loose most of the time, but does tighten up somewhat every now and then. Prostate still definitely feels smaller than it was. Massaging it helps both sexually and to make it feel better. Since doing that, my prostate has hurt less and less and my ball pain is 99% gone.
Panic attacks are gone, but muscle twitching while reduced is definitely still a problem. If I try to flex, you can literally see muscles shaking. I see my foot twitching when standing on one to put sock on another as well. Randomly, especially at night, I’ll just randomly have this all body twitch. I wish I could find a name for it, it’s bizarre.
Humor, wit and zest for life is back most of the time (if I forget what’s happened to me and I do try my best). There are moments I’m generally happy and I can understand conversations again. For the first few months, I’d zone in and out and have to ask for things to be repeated all the time. That or just have this awful sense of dread randomly. It reminds me of when you did something bad as kid and knew you were going to get caught, but amplified. Especially at night. Just like you know it’s all over.
I’ve been a very articulate and technical person all my life and if I may say have always written very well. The trouble is though lately, I make all sorts of typos, grammar mistakes, I mean I know this will be a mess, but hopefully understandable. I mean just compare the eloquence of my initial post and this one.
Can think clearly on most days, have moments where brain fog feels 90% gone. Unfortunately though, I have days where I’m right back to square one and you may not believe me, but on those days, I have trouble remembering the names of people I’ve known forever. For instance, my dentist (who fully believes me about PFS and has been fantastic) and whom I’ve seen since 2013 comes in to see me after the hygienist and I go great to see you Doctor um um. Yeah, I felt awful and apologized profusely. Thankfully, he understood.
Another terrible thing that happens sometimes is I lose my perspicacity, stuff that would be simple for me to figure out before, is just too much. I feel like an idiot and that’s sometimes the most heartbreaking thing, other than being in a room with a doctor with less medical knowledge than you…which is frequent and scary as hell.
Sweating again, not as much as I used to, but definitely better than before. Skin healing better again. Even bruises healing better again.
Now, while that’s great, here’s the bad news, my skin is as dry as ever, my mouth while not always dry is still generally dry I’d say 75% of the time. My joints are popping and clicking as much as ever and some days even hurt. Muscle wastage continues and skin is really flabby. I can even bunch up skin of my nose and contort my face like Jim Carrey. I can stretch my cheeks out like a cartoon character. I feel like a kid in an oversized skin suit. For lack of a better way to put it. Nails have ridges and I can break off ends without a clipper sometimes. They are that brittle. Gum rescission continues, but oddly enough, is only affecting the back right side of my mouth. All my teeth are loose and hurt. The back teeth are all jutting out in different directions. My Tinnitus which calmed down like a month ago is now randomly back in full force. I went from having incredible vision to requiring glasses. I went from 20/20 to 20/30 overnight. The thing is though, at night my vision is actually pretty good. Whenever there is light though, especially sunlight, I can barely open my eyes and things are incredibly blurry. My left eye seems to have lost all moisture/tears and it’s the blurriest. The right eye still has moisture and it’s definitely my better eye. I no longer produce snot or ear wax, but I have constant nose bleeds. My stomach which used to hurt all the time in the beginning actually feels somewhat decent most of the time now…but that came with a cost, now my stool has blood leaking from it. It’s very odd, imagine a “log” sitting in the toilet and just oozing blood, so much so the water turns red.
I keep getting big red lump like zits on my skin (everywhere but my face thankfully), they are very itchy, but generally go away in 24-48 hours. Hair loss getting worse, but amazingly despite the massive 50% loss, my hairline has not receded.
I have very big lungs and have always been able to hold my breath underwater for a very long time. Now, I struggle going up the stairs.
During the daytime, I have no energy and can only do computer work generally. At night, I am loaded with energy and can’t sleep.
I try to walk my dog and that has been getting better and one of the days when we got back. I felt a lot of energy and no joint/muscle pain, so I decided to go running. I swear I was back to normal. It was incredible and I used to run all the time. I felt unconquerable, like I was top of the world. A few days later, I couldn’t do it again due to back pain. But, I’m hoping for that feeling once more. That had to be two months ago now.
Also, my voice is much weaker. I used to have a very deep voice, now it’s very light. I can’t hit notes I used to, both high and low. I’ve lost my range and can’t do impressions like I used to. Would be great at parties, etc - no more - at least for now.
My fingers and toes all shrunk very early on, but they seem to be going back to normal size. I know it sounds bizarre, but that’s what happened. My jaw is also very loose at times and clicks. I can move it in very disturbing ways.
I’ve gone thru a ton of doctors and am finally seeing a University Endocrinologist and Neuromuscular doctor next month. Recommended by my new GP and Gastrointerologist who believe me. I also found a new Urologist that said he’s never seen it before, but has no other explanation and wants to do whatever he can. He put me in touch with the new GP too.
Old GP had me do 24 Hour Urinary Cortisol Test, I ended up needing 3 jugs. The usual is one. His response was I must be drinking too much water. No joke. Anyway, my cortisol was thru the roof at 194 and Creatine was also pretty high. He said that had to be a mistake and ordered Dexamethasone Suppression Test. After that, I was on opposite end of spectrum, from Cushing’s to Addision’s. He said that proves nothing wrong, went to a better doctor who said if anything, it proves something is very off. Very low white blood cell count at 3.7. Testoterone very low at 395. Vitamin A and Vitamin K just above normal limits. Vitamin D is “low normal” at 32. Also, all my thyroid readings TSH/LSH are “low normal”. I can get scans if they will help, my new GP thinks my Pituitary is damaged and everything is downstream from that.
Have also seen Cardiologist who has been great and believes me. My aortic valve has a small leakage and my heart overall appears inflamed and enlarged. I’m supposed to get an EKG every three months now. Early on, my heart was pounding like crazy. In the first week, I went to the hospital, I thought I was having a heart attack and might die. They were so kind to me…they accused me of being on drugs and casually mentioned they had police officers there. My heart felt really small and was beating at an insane rate. Now, I can barely feel my pulse when I touch my neck. It’s very faint and weak, equally as scary. It also reminds me that when I turn my head now, I feel/hear a crunching nose the middle of the back of my skull. Where the brain stem connects? I’m not sure, but it is very disconcerting.
Apologies for ranting, just want this out there if it can help someone else or in case something happens to me. I will get tests scanned if anyone desires. While I’m happy about the lawsuit, to be frank, I have as much faith in the US court system as I do the FDA. Still though it’s a step forward just like Baylor. I will share anything I find that works for me (or doesn’t). We are all in this together. I love you all, let’s keep fighting!
