My story. Age 20-29. The story of Rusheil

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?
SOUTH AFRICA

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
REDDIT. AND GOOGLE. SEARCHING FOR RECOVERY STORIES.

What is your current age, height, weight?
29. 1.71M. 60KG

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
FINASTERIDE

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
NOT SURE…

What condition was being treated with the drug?
SUDDEN HAIRLESS (TELOGEN EFFLUVIUM)

For how long did you take the drug (weeks/months/years)?
ONCE. APPLIED TOPICALLY ONE TIME. ONE TIME.

Date when you started the drug?
I WAS 20. 2016

Date when you quit the drug?
AFTER ONE USE.

Age when you quit?
20.

How did you quit (cold turkey or taper off)?
COLD.

How long into your usage did you notice the onset of side effects?
IMMEDIATELY. I PASSED OUT FROM THE FATIGUE A FEW HOURS LATER.

What side effects did you experience that have yet to resolve since discontinuation?
SEXUAL DYSFUNCTION, NO LIBIDO, EMOTIONAL BLUNTING, BRAIN FOG, NO HUNGER OR THIRST. ANHEDONIA.

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[X ] Loss of Libido / Sex Drive
[X ] Erectile Dysfunction
[X ] Complete Impotence
[X ] Loss of Morning Erections
[X ] Loss of Spontaneous Erections
[X ] Loss of Nocturnal Erections
[X ] Watery Ejaculate
[X ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[X ] Reduced Sperm Count / Motility

Mental
[X ] Emotional Blunting / Emotionally Flat
[X ] Difficulty Focusing / Concentrating
[X ] Confusion
[X ] Memory Loss / Forgetfulness
[X ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[X ] Lack of Motivation / Feeling Passive / Complacency
[X ] Extreme Anxiety / Panic Attacks
[X ] Severe Depression / Melancholy
[XX] Suicidal Thoughts

Physical
[ X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[X ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[X ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[X ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[X ] Lowered body temperature

[ ] Other (please explain)
[X ] LOSS OF HUNGER. LOSS OF THIRST.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
SEMEN RETENTION (HELPED THE MOST) . EVERY DIET, VEGAN, VEGETARIAN, CARNIVORE, KETO, ETC. FASTING, WATER FASTING. B12 VITAMINS NEUROBIAN.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?
LOST THE RESULTS A FEW YEARS AGO, ALL THREE CAME BACK WITHIN “NORMAL LEVELS”

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

THIS IS MY STORY IN SUNMARY:
Prior to this, i was 20, beautiful with great hair. I was intellegent and smart, there wasnt a single thing i coudnt understand, i got into chemical engineering at the best university in my country and got in from a small town public school. I was always naturally precocious, i played 3 instruments and picked it up very quickly. I was funny, i was easily liked, I enjoyed the reflection in the mirror, i was ambitious, I enjoyed sex and was never at a loss meeting people, i was confident and boisterous. I was living the dream, I didn’t have a care in the world. I had no idea of what depression was. I had no idea what suffering was. That all changed after one use of finasteride.

I went to a doctor because i had sudden hair loss, which seemed strange to me. Dermatologist saw hair loss and immediately prescribed finasteride. Turns out I had telogen effluvium, which causes hair loss from a personal stress event, and would’ve resolved itself after a few months naturally, if the dermatologist had any mind to examine me properly he wouldve known that. He did not warn me of any dangers, he prescribed it so off handedly i didnt think twice about it being dangerous. Applied the finasteride topically once. Literally just once. A few hours later I passed out from extreme fatigue. I skipped almost two days of lectures.

I woke up with an incredible brain fog. I also immediately felt no libido. I remember that moment so well, I somehow just knew it was gone. That is probably my last salient memory from those first few years; that was the beginning. The brain fog was severe, I barely managed to pass my university courses that year (im grateful for my friends who helped me get through that difficult year), I was barely able to shower and feed myself. I couldnt feel hunger or thirst, I kept forgetting everything, including to eat or drink water. I also “felt” I could not feel my emotions, it was weird to explain or put my finger on, like my emotions were behind a glass door, just out of my reach. I didn’t know what was happening, I wasn’t angry or scared or sad… I just was existing (with incredible brain fog and fatigue). I just figured it would go away eventually, whatever this was.

That first year, I was severely depressed. I got incredible panic attacks. I was expending extreme amounts of energy trying to do the bare minimum keeping my head above water. I was always tired. I was depressed, I had no motivation or passion or drive, I just did the bare minimum to pass my courses, which was my main focus. It was the one thing that kept me grounded. Passing my courses, not learning for enjoyment, not learning for application, but purely to bare minimum pass. It was exhausting. Extremely exhausting. I can barely remember anything from that year, I just remember bits and pieces of the worst depression of my life. At the time, i just wanted to die, it was all i wanted, it was the only thing that made sense. I am extremely proud of myself for the resilience I (from God knows where) found.

In retrospect: I didn’t have the courage or the know how to even contemplate suicide, i always held off on that tangent, i read it was extremely common amongst people who had post finasteride syndrome. But Suicidal ideation was really always lurking under the brain fog, it was always lurking throughout the 9 years in different manifestations. Maybe I had such extreme brain fog and after daily Suicidal ideation lasting for years i could compartmentalise it a lot better, I could do Suicidal thoughts with breakfast at some point. I also knew I wanted to live longer than 20. I was young, good looking, and smart (or at least, I had been my whole life until that point. I didn’t know any other mentality or reality). My high school sweet heart relationship ended at some point, i was violently depressed and struggling with everything, while I understood the relationship ending it did not help my depression. I was thankful at the time that I couldn’t feel emotions, because the heartbreak would’ve probably broken me if i could’ve felt it. It was like the emotions were all behind a glass wall that I couldn’t access, like it was there theoretically. I wish I could’ve felt the heartbreak, I wish I could feel any sort of emotion…

I used to feel love for my boyfriend at the time. I remember the aching in my chest. Literally. How warm sensations pulsated in my chest. LITERALLY. How my body reacted to him. How I thought about him. How his touch on my hand alone would drive me crazy. How I would’ve done anything to protect him, i used to fantasize about doing well at school so i could provide for him… all of these feelings disappeared over night (and for the rest of my life). Replaced with nothing but stress and anxiety and depression. This is a tiny aspect of the masculinity that finasteride destroyed… Its strange recalling these emotions now, an entire life time ago.

My hair quality had changed too, what once was thick volumous indian hair was and still is thin and straw looking and unhealthy. Ive read similar experiences due to pfs. A constant reminder of my tragedy, literally everytime i saw myself i would be reminded of this affliction… my facial features changed slightly as well, it was slightly less masculine than before, i now understand it was pfs that changed my face. I looked slightly stranger. The lack of self care due to depression did not help. I kept my hair long so I could simply tie it up, but everytime I saw myself I was reminded of this invisible struggle. ItI kept my hair tied all the time, it was comforting to control that aspect while everything else went to shit. Vanity became the least of my problems (for the first time in my young life). I don’t think I’ve ever got over this insecurity.

After the initial weeks/ months, the intense fatigue probably left me, the brain fog still there but less so. I remember wanting to move on and get back into my life, i was not used to these levels of depression and anxiety. I met up with someone i was chatting to before all this happened and wanted to get back to my normal life. I thought maybe i just needed to be with someone to get my libido going (god i was so naive). But the entire night I was completely unable to participate sexually. I realised I couldn’t even feel my penis, it was like I was numb. That’s when I knew how serious this was. I was so embarassed and ashamed. I felt such doom and imploding anxiety. I went online searching for answers and found the devastating news of post finasteride syndrome.

I saw the symptoms I had. No libido, emotional blunting, brain fog, memory loss, no hunger no thirst, numb genitals, inability to feel love, muscle weakness, etc. Maybe it was the brain fog, maybe it was me not wanting to accept it, but I realised I had been experiencing these symptoms all along and not wanting to believe it or having it fully articulated. I didn’t know how confused or delusional i clearly was. I had been chemically castrated. Potentially forever…

I read that for some, the effects were permanent. I was completely floored. I don’t know why, but I just felt like I was one of those people where it would be permanent… my libido just felt so powerfully gone. Not even a whisper of Libido. But I held out hope, with a delusion and persistence from God that could only be described as insanity (because it was beyond logic, it was a kind of intense faith almost) that I would get better. I also think it didnt fully hit me then, that this could be forever, i wasnt about to accept that. I didnt have the ability to process how my life would be, i didn’t know what the day to day would be, not back then… I read stories of guys recovering completely. I was determined to be the same.

I figured, when I recover, I need to have my degree and career prospects ready. It took every bit of energy I had to focus on studying. That was my only pursuit. Relentlessly. I didn’t make any friends outside of class, I never went to parties, or clubs, never met anybody no dating (lol, not that I could perform sexually at all or have the ability to feel love. I also didnt want to have sex. But i did crave the intimacy… more on that later). In the prime of my life at the best university in the country and I was not enjoying any of it. Even with all my dedication, I was barely passing. I scraped by through help of friends and God. I hated every minute of it. My lecturer once made a joke in front of the class about how it’s a miracle that I made it to the next year… if I felt emotions, I would’ve probably been angry or sad or embarrassed, but nothing, if anything, i agreed with her mean jab… it took me 6 years to finish the 4 year programme with a less than exciting final grade and at incredible cost to my mental health and wallet. I’m grateful I took a year at some point to just rest and recoup, which fueled me long enough to make it to now.

I went to many doctors. They didn’t believe me. One doctor was so adamant that it was all in my head and I should just reduce my stress. I felt so hurt by the doctors not believing me no matter what I said and did I decided to never tell my family or anybody else. Besides, this is such an incredibly tragic and painfully sad trauma to happen to someone, i didnt want the pity that would inevitably come with telling people, id rather them think me dumb (which was once an incredibly new experience to me, which i have now just come to take in my stride… :frowning: ). I just wanted to get better with time by myself. Reading posts online as well at the time, I knew there was nothing I could do besides wait it out and hope for the best.

I clung to life. I wanted to live more. I wanted to get better. I wanted to feel horny again. I wanted to be smart again. I wanted to be healthy and live the normal life I was promised. I wanted a cool job, I wanted to be young and enjoy my friends and learn about the world and play music (i love music. Besides my friends, playing music was the only thing that made my life worth living. It was the single thing that made me feel alive and connected to life and made me grateful to be alive that was all mine). I wanted to find a partner and do all the relationship things all of my peers were experiencing. I wanted all of it.

How I coped from then to now: at some point, maybe two or three years in, my penis became less numb (not completely unnumb), I was able to at least feel it. I found that drugs (usually weed… mostly) helped me “enjoy” sex, it made it less mechanical. I wanted the intimacy that comes with “relationships” more so than the sex, and in order to get intimacy I needed to be able to have sex from time to time. Viagra was required for me to perform in any capacity, weed made those experiences manageable and tolerable. It does become exhausting to be high to be intimate in any capacity. I’m not able to match the sex drive of my partner at all, i couldn’t keep up, I would just get tired of the facade of prentending to enjoy or want sex. Yet another aspect of my life was exhausting. But the pros outweighed the cons, in this regard. I got to feel normal for a fraction of time, even if unsustainable. I still wanted to talk to people, i was trying to be normal by any means.

One cruel thing about this, to add insult to injury, I could still mentally understood attraction, at least slightly. I found people attractive, not as powerfully as before, but just enough. I mentally was still able to at least recognize attraction. My body just didn’t respond. My body had no reaction to anything. No matter what, the Erectile Dysfunction and loss of Libido was beyond anything I could fix on my own.

I think my extreme level of delusion was my biggest asset. The mind is a powerful thing, my trauma response to being chemically castrated was to never think about it. I put all of this PFS out of my mind. I didn’t want to think about it and I did not. I wanted to desperately believe my doctors and that it was all in my mind, I was waiting for when my body fixed itself. I thought about getting better, I believed it would happen. I had faith. I convinced myself into believing whatever I needed to in order to survive. I know now that one’s mindset is incredibly powerful, even enough to ignore such a clear trauma staring me head on with blinding lights. Maybe it was unhealthy, maybe I should’ve dealt with it differently. Maybe I should’ve told people. But my delusions got me through the day, and that was all I needed, getting through the day was all I wanted. (Which made long term planning difficult… but I digress).

I found that going long periods of time without this fake sex, i felt a lot better. I found that sex/masturbation was very very very very taxing on my body and mind. It was fun, but it required a lot of planning and coordination and rest and recovery. I hated how prepared it was, every other person on earth has immediate spontaneous access to enjoying their bodies, but i needed substances and vitamin shots and prescribed medication and planning. Fake sex - meaning that i would need substances to either perform or enjoy it, not something that i naturally would want. “Fake” sex was also a trauma response, I just wanted to feel something, anything, but it was always so overwhelming and I hated how I felt, the measures I’d go to just to feel an iota of normalcy. I did not want to accept my condition, I was trying my best to live a normal life even through highly not normal means.

But I found semen retention. I naturally could go long periods of time without masturbating. My longest streak was 7 months. I’ve had many 6 month streaks. Semen retention helped maintain my mental health, cleared my brain fog a little, provided a lot of energy to study. I would break my streak for various reasons. It felt good, even if the sensations were dulled, it was something, which was better than nothing… Exercise was difficult, but yoga helped feel good too, even though physical progress was capped due to weakness and lack of motivation and fatigue.

FAST FORWARD 9 YEARS TO TODAY:
Still no libido, as numb as the first few weeks. I can get erections, but only if im well rested, well fed, and after lots of sexual stimulation - but even then, the erections only last a min or two. I need viagra, but less frequently, one pill seems to be effective for a few days rather than the few hours as it did in the beginning. I still don’t want sex. I still feel my penis is some strange appendage that is foreign to me. I don’t have the drive that other men have, the drive to pursue a career or have a family or a partner, or eat everyday, or to live in a nice house, or to level up. I just want to get through the day as best I can. My brain fog is still here. My memory is so bad and only getting worse. I can barely read books anymore, I can only listen to audiobooks, and even then I need to rewind very often to make sense of what’s going on.

I still can’t feel emotions. I have to contextually figure out what emotions would be appropriate. I don’t feel. When I close my eyes, all I feel is my heartbeat. Emotions are meant to guide and navigate humans through their life. If im not able to feel anger, how will I know i need to change something? It’s also how we relate to each other, i can’t relate to people as naturally because im faking my knowledge on emotions. It’s crazy to say now, but the sexual side effects are the least of my worries. I cant feel love. I cant feel love. I cant feel love. I “know” I love people, but I don’t feel it, it’s not instinctual, it all comes from a “logical” point of view… anhedonia is fucked.

By some miracle I got a job and have been here for 2.5 years. I can barely keep up. Every single thing I do has something wrong with it, mistakes all the time, something always missing, projects have to be pulled back because of an error found, projects are always behind. Mentally I can’t concentrate, it’s as if my brain has got worse over the years, like I’m deteriorating. Work is embarrassing, but luckily, due to the workplace politics (and God’s cruel sense of humor) I have not been fired. But I feel shattering shame at the lack of competence, and it seems no matter what I do or how hard I try nothing is good enough, and im not being hard on myself. I cant find another job, it’s amazing I even got this one. It’s a matter of time before people start to actually make moves to fire me. I just cannot understand things, I’m so confused all the time, I can’t remember anything, and i don’t have my friends to help me like i did in school… the shame is exhausting. It’s not even that difficult a job, and im just getting worse and worse at it.

I still feel no hunger. No thirst. (Think about that - not knowing when you’re hungry for 9 years. Not feeling quenched by water for 9 years. Its like a perpetual dry mouth). I still feel no emotions. I have ZERO drive or motivation, as hard as I try. Even if i found another job, any job, i still would be a ghost pretending to be living. Shout out chat gpt for being the only thing keeping me employed.

I have made peace with never finding a normal long term sexual partner. But I realised this impacts my social life at large, I can’t genuinely feel emotions, which is how people communicate to each other, and i have no idea what I’m feeling at a given time. It sometimes takes me weeks to figure out how Im feeling about something, I never get angry, I don’t get sad, I don’t get jealous, so I have to give it some time to contextually understand how I should be feeling about something. Which is madness. And frustrating for people/colleagues around me, let alone frustrating for me. My friends that have stayed with me, are naturally extremely understanding people.

I also feel like libido and sexuality drives motivation. Its sexual energy. ENERGY. It fuels people to get jobs and earn money, to find love and make a life. In men, it makes you want to provide and protect someone you love, but i don’t want any of that. I don’t have access to that energy anymore. I have no motivation, no reward system. I’m stuck. And lost. Without libido, without love, all that’s left is anxiety. That’s really the only “emotion” I’ve felt. It’s disconnecting from the rest of the world. I’m so alone. Its so isolating. My social skills are getting worse too, I’m losing more and not the ability to talk.

Drugs have been used to help me feel something. Whether recreational or prescribed. Especially to engage in sex. And particularly to eat food regularly. And to help regulate my emotions. In the beginning, smoking weed and sensing some sort of libido/ hunger would make me feel like I can be fixed, like its all accessible in me somewhere, just beyond a wall. But using drugs to feel normal is a slippery slope… especially to replace ones sex drive… at this point i feel addiction to serious hard drugs are inevitable at some point if I continue to live on like this… i don’t want to be an addict. But I can’t continue to live like a ghost.

(I’ve gone many 6 months of being sober, just to ensure harmful drugs aren’t keeping me from recovery. Combined with semen retention, meditation, yoga, fasting of all kinds - even 5 day water fasts [which are convenient since I hate eating] and complete dry fasts… ive tried to live wholesomely and healthily. While these things help keep the mind more at ease, the numbness never leaves, the libido never returns)

I also realised that my piano abilities are deteriorating as well. This is the most devastating thing ever. I look at the keys, and where I would once see patterns and shapes of harmony, I now see nothing… the one thing that made me feel alive that was mine, no prescription needed. The one thing I had left in the world that I thought couldn’t be taken… is now slipping away from me bit by bit. Like when musicians get dementia and lose their ability to play, that’s exactly what it feels like. I know in retrospect, my abilities were always deteriorating slowly over the years, I just didn’t notice. I hate that I didn’t notice the deterioration until recently, I’m think it’s evidence of the delusion and brain fog that still persists.

My music… its the last straw on the already exhausted camel. I cant take it anymore. Sex, emotions, passion, love, hunger, thirst, my intellect, my hair, my ability to feel pleasure… all divine birth rights that are supposed to be God given I am denied at a chemical and molecular level… its so unfair. Everything that makes life exciting, everything that makes one human I HAVE HAD TAKEN AWAY FROM ME FOREVER WITH NO SIGN OF A CURE. All ive been left is anxiety, depression, and confusion. The relentless and delusional fight that fueled me to this point has been depleted… theres nothing left in the tank, theres no light at the end of my tunnel. Im so tired. Everyday, I’m tired. Everything is always so hard. I’m tired of fighting to barely meet the bare minimum, be it with work or my friends or speaking coherently. I’ll never have a normal relationship with anybody, and a young man in his twenties should be meeting people and having fun making a name for himself. I only feel anxiety and depression (i think it’s bevause these are both states of mind rather than an emotion… I don’t know).

I crave to not exist… It feels like i barely exist now anyways… im just floating through life… i know that Suicidal ideation is a common symptom of pfs, I know it’s part of the deal. I know how many have been lost to suicide due to pfs.

Finasteride has taken away everything from me besides my ability to breath. I’m living a ghostly life, a cursed life. A debilitating INVISIBLE trauma that nobody can understand or even believe. I didn’t think I could feel this alone.

I’ve managed to build for myself a life with just enough to keep me somewhat “content”. But there’s so much that I’m actively missing. There are relationships in my life that I enjoy and am beautifully grateful to be alive to experience. But there’s always this doom in the background. No matter how hard i try. No matter what religion or philosophy, I just feel doom. I think in the absence of my libido and emotions, the only thing left is doom and anxiety (like its a primal evolutionary survival mechanism that even finasteride can’t wipe out. In a way, it’s what got me through school and work… not fun, but i got through it).

I miss the man I was. I mourn the man I could have been. I mourn the partner I could’ve loved.

9 years on and have I got better? I was waiting relentlessly all these years, once I got better id be able to slip into my life like nothing happened, like a bad dream. But, 9 years later, I’m not sure if that’s in my cards… which is shattering once you accept the realization, especially after 8.5 years of intense (delusional) faith and fighting. Life tied to drugs for intimacy is sad. I may have been really good at hiding it (at least i think) I know this might come as a surprise, but if you think about it, I’m sure you can piece together what I’ve written from what you may know about me. I tried to play normal as best I could.

I am so incredibly proud of how hard I’ve fought these 9 years. I’ll say that again, I’m incredibly proud of the fight I’ve put up these last 9 years. Nobody can say I didn’t try. Alan Turing lasted 3 years after being chemically castrated, I’m at 9 years.

Everyday is a fight. I cant look after myself, feeding myself is exhausting, washing myself is exhausting. I cant work (if it was 300 years ago, id join the church) my memory is getting worse and worse. I have crippling anxiety all the time. This isn’t your normal depression “go sit outside in the sun and Ill feel love again”. 9 years on and im getting worse, which is the opposite of getting better. In the background of everything of my life, simply life feels painful, even in supposedly happy situations, in the background fundamentally there’s always a sense of doom that NEVER leaves. Ive learnt to make a home in doom, but at what cost?

I used to be masculine in character, now I’m timid and afraid. I used to know how to dress well and fashionably, i used to be charming and charismatic, i used to understand how life worked. And it’s not just in my head, as much as lazy doctors would want me to believe. Losing the the desire for sex, losing capacity to feel emotions, losing my memory… i know i said the mind is a powerful thing, but god why would it want to do that? It makes no sense… I knows it’s real. I KNOW finasteride did this to me.

This is a medical condition that is incurable and permanently changes how I live and who i have become.

If youre reading this and share any affliction related to PFS, please fight on. Don’t give up. Maybe you’ll be different and heal, maybe you’ll have a chance at life. Maybe a cure is around the corner. I will say talk about it, tell everybody, try and make a life like this in whatever form. I fought for 9 years, I experienced many magical friendships and incredibly beautiful moments that I am incredibly grateful to have seen myself and experienced. Life is beautiful and worth living. My friends and family are the beautiful distractions that made me forget and continue the fight. But one can only be distracted for so long.

I pray that the medical community can recognize the harm of this drug. And I pray that one day, nobody ever has to experience this evil. I would never wish this life on my worst enemy. It is evil. Its inhumane. Even I, 9 years into this hell, can’t believe it… its so remarkable how tragic and sad this is. How unnatural this is. How evil this is. How inhumane and unhuman this is. Rather the entire planet go bald than one person suffer post finasteride syndrome.

I tried to be kind where possible despite this devastation I suffered silently. Im trying to move on with acceptance, hopefully documenting my story, at least very briefly, will go some way to helping me process. And sharing i hope it makes someone feel less alone.

I pray for all of us.

Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY

  1. Name of the therapy/substance:
    • Dosage:
    • How often you took it:
  2. Status
    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [ ]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [ ] Months [ ] Years [ ]
  4. Response when you started:
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
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    • Greatly worsened [ ]
  6. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
    • Greatly improved [ ]
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    • Stayed the same [ ]
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1 Like

Very well written Rushell Another heartbreaking story that I’m sure will resonate.

I’m well into my 3rd decade of this hell. Never give up, hope, don’t give merck the satisfaction of another statistic…

Keep your faith. It is what has kept me here Miracles still happen

We all want to be here to see justice served. One day we may even have a cure.

Life is all things including pain. Suffering can bring huge growth. Imagine how things would be with this behind you. You haven’t come this far for nothing.

Hang in there God knows our suffering and he is with us. Trust in him.

5 Likes

Thank you for posting this. Incredibly well written and encapsulates how everyone here feels. I can tell you have a lot of tenacity to make it this far. I hope you find some relief, man. I share all your pain, this is no life, but I’m holding out, too.

3 Likes