TBH I don’t believe they will be held accountable but I’d glad to have them pay for all those destroyed lives and lost years.
Having a bad reaction to the antiviral can’t take it.
Guys I’m starting to get very worried this triggered als or some type of other crazy degenerative disease in me (als being my main concern). Muscle atrophy starting on one side, tons of twitching, loss of facial muscles on one side resulting in a deviated septum. I don’t know what to do the only thing that doesn’t match up is the joint cracking and neurological issues. But I’m fucking terrified, doctors aren’t understanding the severity of my case. Also no sexual symptoms which people with als don’t have. Is it possible that this can trigger als? My god this nightmare doesn’t end, I need out of this misery.
I’ve been having some wavering thoughts of what comes next even wrote out a ______ letter. I’m so lost this doesn’t feel real. The end feels near for me.
I can’t describe the feelings I’m going through I was hit so hard, all that’s been on my mind is what comes after life. I’m trying to hard to stay optimistic but it’s become impossible. Everyday it’s something else, and I have ZERO attachment to reality. I lost my friends, doctors don’t believe me even though I’m having SEVERE physical symptoms. Im trying to fight but I think I have a degenerative disease which will kill me soon anyway. Sorry for the rant guys, I don’t know who to go to. Too many tears shed.
Muscle loss isn’t uncommon amongst PFS sufferers so I wouldn’t jump to conclusions about having ALS. I know it’s still scary. Also sounds like the anhedonia, depersonalization, and anxiety are getting to you. understandably. Have you had any “not so low” days in the past week? What gives you some relief from the mental pain?
Try not to do make any hasty decisions in a desperate state of mind. I’m really sorry you’re dealing with this at 20 years old but you have youth on your side. 4 months is a long time to struggle and I admire you for fighting it out this long. I know you’ve heard this too many times but there is still a chance you can get better or atleast your symptoms can level out. You talked about how supportive your family is. Try to talk to them, even if it’s just a conversation in your head. Please hang in there. Those words probably sound hollow to you but I mean it.
It’s harder for very younger people with PFS because it’s sometimes the first tragedy they’ve dealt with and it doesn’t get much harder than PFS. Correct me if I’m wrong. But people can come back from all kinds of downfalls. And even if we find a cure 10 years later, you’ll still be young and have lots of life to live. Hopefully you recover naturally way before then.
I wish I had better advice. Personally, I have no idea why but when I took a trip with my immediate family, my mental symptoms started to somewhat subside immediately. I know you’re worried a out the physical symptoms but with a strong mind you can defeat anything. Why I got better? Could’ve been just time passing, the lower pollution where we traveled, the friendly people, or the altitude from the plane. Who knows? Or it’s possible it took my mind off of my situation which led to a better mental state. It wasn’t easy at first but eventually it got easier. Just thought I’d share that as a possible remedy. If you can still walk. Traveling has been shown to cause beneficial changes to the brain too. Anyway I’m rambling but had to say something.
Feel free to message me or anyone else. There are also therapists who specialize in helping patients deal with severe diseases. It’s a specific skill and you can learn specific techniques from them. Your family could help find you one.
Depersonalization will end, my friend
I hope hope hope it does😭
New symptoms, more bone loss in face, more head pressure, derealization, shortness of breath, muscle loss, tightness in throat. This is not a life, I’ll probably die naturally at 21 soon, but every day until then is complete torture. My condition is tearing up me and my family. I have no options, I can’t continue and I can’t commit, it would ruin my family. This shit just feels like a long ass nightmare, but I never wake up from it. I’m admitting myself into a hospital tonight.
New phenomenon, large progressive indentation going down the whole left side of my skull yayy!!
This is so fucking odd, my right side is untouched, the left side of my face and skull is deteriorating and changing. I have an incredible amount of pressure there. This shit just keeps on getting crazier and crazier.
I genuinely think I’m dying, I’m really not doing well here. Complete loss of cognition, no appetite, terrible rapid physical changes to the bones in my face and skull. I don’t think I’ve encountered one case here similar to mine, even within the pfs community I feel alone. I can no longer go outside due to terrible light sensitivity, I can’t drive, I can’t go to school, I can’t work, I’m even embarrassed to see my friends due to my change in appearance and frankly scared because I don’t know how to act amongst people anymore. I’m tired of living but too scared to die. If I didn’t have this fear of the unknown that all of us have I’d happily commit suicide, because this isn’t a live worth living and I see no future for myself. Thank you Merck.
You are not alone. I hang in bed right now. Try to stand up going down stairs. Calling pizza service for a cheeseburger and a salad as breakfast and lunch. Hang in my chair, freezing. Try to get out for a little walk in the dark. Walking around the house. Watching suicide videos. But afraid to do it. Hope for a bed in a psychiatric clinic without medication to get back any motivation.
Yes and playing my endless circle, about not having taken the pills.
What a funny life could I have,
checked the internet for
5 minutes for finasteride side effects
or like you stopped this Russian roulette after the first time.
“Then about 8 months later I foolishly decided to try .25 again (a quarter of a pill) once, because my friends been taking it with no issues (interesting how I took .25 once before and had no side effects). And almost immediately I had this cold, shaky feeling. Followed by the worst…”
I’m so sorry my heart goes out to you and everyone suffering from this terrible condition, but this is incredibly relatable. I strongly feel like there needs to be more focus on these full blown pfs cases (one pill/use after a hiatus) because they are a completely different beast. I’ve watched countless suicide videos, scouring the internet for different theories on the afterlife. I need some damn relief. I’ve reached a point where I’m not crying my eyes out every night in a derealization mess because I can’t connect or relate to the real world. I’ve reached a state where I just don’t care anymore which is really worse because at least before with all those emotions I had a drive. I no longer have drive. I just exist, don’t know how much longer I can “just exist” in this non human state. This tore my life to pieces, I’m in shambles.
So I don’t want to bring you total down!
I just want to show you that there some others who share your pain.
I stay with my thoughts with you. You’re really beaten harder as me. But I know that feeling of only existing too.
I fell down into the great nothing from a high performanced life.
I’m dying this is pointless, my skull indentation gets larger every day. I feel more lost and impaired every day. I don’t wanna go on like this. It’s absolutely insane that a quarter pill can cause your skull to rapidly change shape. I’m fucking losing bone on the left side of my skull and face this is completely ludicrous.
I’m seeing a bunch of doctors in a week, I’ll give a week to see if they can do anything for me if not I don’t think I can go on like this. My skull is caving in, I’m really shaky, I have twitches, I have insomnia, my joints crack, my extremities are cold, I’m losing my hearing in my left ear, my vision in my left eye is going bad, my gums are completely recessed, the left side of my jaw is getting really weak, I have horrible memory, complete derealization 24/7, I can’t drive, I can’t work, I can’t go to school. I’m going to die soon at this rate naturally. I can’t go on like this.
I can’t go on with this bullshit anymore, I’m subhuman. All of my peers are excelling in life and I’m just deteriorating. My brain is fried, my body is fried and there’s nothing I can do about it but sit and wait till I just decompose to nothing. No thanks. Fuck this shit, I’m in so much pain, this is the Fucking depths of hell, nothing works anymore, fucking nothing, this is unimaginable suffering. I can’t hang in any longer, I’m no longer a Fucking human being. This shits medieval torture. I swear they’ll have me committed soon, panic attacks 24/7, I can’t drive, go outside, don’t know how to interact anymore, nothing. I’m completely disabled. I’m just told I’m fucking delusional. Was completely healthy and prospering in my life till I took a quarter pill, a damn quarter pill. I already envision my funeral and eulogy. Im a dead man.
I am very sorry you are suffering so severely. As one of the more severe cases myself, I can relate to a lot of what you are going through. These physical changes to your skull and face? Has a doctor checked this and provided any explanation?
I suggest that you try to give it atleast a year as many people have reported natural improvements within that time frame. Unfortunately I only got worse myself but I also got hooked on benzos which I think made me worse long term. I have seen people that crashed worse than me make some significant improvements with time. I would suggest showing your parents/loved ones the family information pack on PFSNetwork.org.
@Headpressure it’s been like this for a long time for me my brother. The years have been tortured. If I could go back to when this got really bad and ended it would I have been better off? No certainly not!!
Despite everything I’d still go through it to be alive even if it is in a zombie like state, with no friends, no lust for life, emotional and physical pain, a degenerating body, a fear of all foods, avoidance and looked down upon by the same people who used to sit on my wave, the constant upset, A different face to the one I had just a few years ago. Seeing overweight fat cunts on the piss, smoking tabs, eating shit having a laugh seemingly without a care in the world and loving life. etc etc it’s a killer. Considering my own levels of health and fitness
Despite all of this I intend to see this out, fuck the world why care, I try to forgive. In a few years time with the work going on we might be in a position to regain what we’ve lost. Be hopeful.
Hang on man finding out another kid died near me really upset me because I know he could have still been here if I’d known about him. He wouldn’t have been alone in this. Don’t give Merck another victory. Please don’t do anything. Think about the what if!!! You could recover naturally there is still time