LazarusRy's PFS journey

Guys i posted where I was in terms of symptoms mid last year. Since when things have continued to progress. I.e new symptoms and a worsening of existing ones. My full list is now as follows:-
Chronic insomnia, suicidal ideation, multiple cognitive issues which mirror what is reported with alzheimers, 24/7 anxiety, headaches, tinitus, now in both ears, ear pressure, vision issues, dry eyes, dry skin often burning, loss of subcontaneous fat, no mucous, no ear wax, accelerated ageing, parts of my face have collapsed, pigmenatation, no smell, reduced taste, bleeding gums, ive lost approx 1cm of tissue, dramatic weight loss, loss of muscle and strength, zero libido, no erections ever, penile shrinkage, testicular pain, extremely cold limbs, lowered core body temp, nail issues, skin infections, no sebum, pins and needles, loss of feeling in hands and feet, food intolerence to almost everything, urination, bowel problems, dehydration, terrible nightmares, socail anxiety cant make eye contact, constant low mood, distress, irritability skin reacts to water, histamine issues, collagen loss across my body, balance issues, confusion, hot and cold sweats every day/night. femininisation, demasculisation, sore weeping nipples, bone, muscle pain, anhedonia, eratic BP, irregular heart beat, horse throat, multiple benign liver tumours, organ disfunction, reduced healing, change to facial structure, loss of jaw bone, its probable ive missed more. Ive lost everything because of this hell… My endocrinologist told me last week that the body cannot sustain this open ended damage and that its likely that a fatal event will occur eg heart attack.i had my first symptoms 20 plus years ago. I never knew of finasteride issues, no one did! so I continued to take the drug on and off until 2 years ago upon finally making the connection. Ive continued to deteriorate. Ive tried every strategy over the years to no avail. The reason for my update is to say that i might be the first to die from pfs (there will be others im sure) and not via the suicidal route which is caused by the drop in neurosteriods. I cling to what remains of my life every day Some will know ive talked of ending it but im not strong enough. For me its a lost cause there is not a damn thing around to help. Length of exposure, stopping and starting the drug has proved too much causing permanent and irecoverable damage. If i disappear dont asume im one of the lucky ones who improved its because the after effects of this poison killed me. I hope one day someone pays a heavy price for what they have done to us. The once happy go lucky lad/life lover is long gone and has been dismantled in the most distructive unimaginable way. I’ve been replaced by a dead tormented zombie. I know many will resonate with this but just wanted to share as no one gets it outside of those suffering from this inhumane disease.

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Don’t apologise @LazarusRy. Thank you for having the courage to share, that must’ve been very difficult to write out.

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Sorry your having these problems without any improvements, I know the feeling. I wish there was something out there for us.

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Out of curiousity, did you have any Brain MRI recently?..If not, i will urge you to do it…Maybe, and even if that wont make you better, might give you some recognition, so you wont die, without proving to others, that this disease does exist (Its not that i care what others think, but this would bring me some kinda peace, to prove, that im not “depressed”, but actually have a serious condition)…Who knows, we might be able to convince those in Zurich, to enroll us in their Euthanesia programm…

Had one 5 years ago and nothing things might have changed since then. I’ll ask for another. Thank you

Weve had nothing but false hope

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Alot of symptoms there. What is your diet like? did you ever make any changes to it?

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So sorry to hear your struggle my man me and your symptoms are very alike. An MRI will not tell you much if you want to delve deeper into the brain and check for damage you need a SPECT brain scan a friend of mine who took an antidepressant only once and suffered brain damage that couldn’t be picked up by a regular MRI scan but then SPECT was able to verify brain damage.

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Alot of symptoms there. What is your diet like? did you ever make any changes to it?

Had an exceptionally good diet, fruit, salad, raw veg and lean protein. That all changed when i realised most of this was harming me and id be i a heightened state of hell all of the time. Ive become intolerent to most things and now live on a high protein low carb diet with no fruit veg etc. Its awful

On the back of Saturday nights new worrying symptoms I referred to seperatley, things have progressed in a different way with seering oral pain which has not abated. I woke after 2 hours yesterday a.m. as usual. to find my gum tissue had bubbled in one area which was extremely tender with what looks like further recession and a new hole in the roof of my mouth. Eating anything is very painful which is followed by all of the digestive and intolerance issues whch translated into the almost immediate onset of widespread malfunction of bodily systems. Last night the same thing happened, I can feel a new recess in another part of the gum and the full line is extremely tender I liken it to the feeling of when you burn your gums after heat exposure and its across the full mouth The global pain in my muscular, skeletal system and brain is out of the park, it feels as though my whole body is being attacked with shrinkage occurring everywhere I’ve dropped a shoe size, my hands are even smaller, feminine and aged like an old woman’s with loose skin everywhere. All of my clothes are too big, even small size shirts hang off me when trying them on in stores… I’ve spent a small fortune over the last few months on facial fillers to try to disguise the tissue loss and hollow/junkie like look. My brain function is deteriorating and my emotional state is one of constant trauma/terror because of the neorosteriod problem. I’m going to visit my sister in a few weeks and have booked assisted travel with losing the ability to make sense of my surroundings
and to think on my feet at times… My short term memory has also took a further hit recently and errors are becoming more common place. I’m going in part to be with her for her unflinching support whilst also trying to shield my son from him witnessing the brutality of all of this and also to give my wife a break. Trying to hide this is a constant battle which makes the situation even more difficult. I have constant waves of pain in the brain tissue too (neuro inflammation). Walking in my stocking feet is so painful as its bone on skin with no padding. My knee caps and surrounding tissue have become brittle and smaller, I’ve become very weak physically with next to no strength because of the inability of the body to utilise testosterone and other hormones. My eyesight is changing throughout the day with floaters, blurriness, dryness, redness, colour changes and pain, then at times it returns to normal Sebaceous glands and other bodily systems are functioning in a similar way. Most of you know I have a lot more symptoms than what I’ve described here today. Drs and consultants recognise the changes and reported symptoms but tell me the condition is poorly understood, state there’s no treatment protocols and don’t know what to do so in turn discharge me one by one. I hope my recent mail to the MHRA sighting referenced evidence and our struggles to get any help will assist in the push towards a change of direction, At the least I’m leaving a footprint for when this finally gets recognised with the drug being removed or at least appropriately risk’d with warnings. We have to be confident that the Foundation’s petition/lawsuit to the FDA will prove to be a major stepping stone in our fight… I also provide updates on here in order to record my path and I’m re assured that others do the same because the world needs to know what happened… We will all be exonerated one day. I had a call from a pastor ive got to know from SA ( he’s an amazing guy and originally from the uk) he re assured me that healing will take place and reminded me of my walk of faith and what I need to do to make this happen. While we’ve been abandoned and dismissed by so many God will always be by our side and in times of suffering he’s even closer, we have to trust that we will prevail. I have lasted this long, and intend to see this through, no matter how bad thiings get suicide is not the answer for anyone. Reach out!!! It only serves to give Merck another victory. There should be a degree of optimism even for the most severely hit. More Drs are speaking out, awareness is growing, the FDA is being squeezed, and we have upcoming research via donations which is largely from sufferers and their families. After all of these lost years things are finally changing, never give up, too many lives have already been lost and destroyed.

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" I’m going in part to be with her for her unflinching support whilst also trying to shield my son from him witnessing the brutality of all of this and also to give my wife a break. Trying to hide this is a constant battle which makes the situation even more difficult."

Good days in South African summer. You’ll stay there for a time or forever.

The problem you told trying to shield your son from witness ing the brutality if this all. It’s my main problem too.

I don’t want that she my daughter sees how I’m fucking up more and more. How my house wasted more and more. The father is wrecking. After half a year, I m bedridden half a day.

Day in day out I ask myself why did you take the fucking pills. After a harmless struggle I thought with fiancee is over now. But what a fool starting than Finasterid. No waiting for some weeks. No information from the internet. Ignoring the package leaflet, wich wasn’t clear in long lasting Site-Effekt ED.

That’s the thing that brings me down 24/7. If someone says ok I know all the horrible sites from the internet, but I do it. So what?!

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People aren’t closed to this disease in SA they recognise the shit that goes on in the world. We were taught/ led to believe what were told growing up in the UK . I’ll say it again dont blame yourself you did not make an informed choice. Level your sights at Merck and Kenneth Frasier if you need someone to blame. Your daughter loves u no matter what. The neurosteriods are playing a big part in how low you feel.

That I have it has happened. But the way I got it is what really brings me down

Assisted travel was demeaning but I got here, sitting on a long haul is becoming increasingly difficult with the knawing pains some of us get in the buttocks and legs 'despite standing and stretching". I’m now into my 5th week. I was due to return home the other day but must stay here because of the new variant. There’s no way I could do quarantine with pfs. Being alone and fed foods that worsen the symptoms. Nothing has changed much while I’ve been here I’ve had some really horrendous days. Saying that I had a couple where my strength, vision and functional emotional state returned momentarily (presence and confidence)but at the same time my teeth sensitivity and bone pain was out of the park. I think it might have been because of the increase in natural vit D and then the bodies inability to process it…Unfortunately as a result I’ve suffered more collagen loss, visible strips of tissue disappeared overnight from one side of my face. I expect the climb in T wasn’t good and has consequences as we know.
I woke to a heamoraghed right eye yesterday, I can only think its to do with the low platelets and thinner blood.that we have. I’ve also had recurring cold sores, something I’ve never previously suffered from. I’ve lost more weight too and am now under 70kg. FFS. I’ve been pushing past the pain and doing light weights for 15 mins most days despite clicking, popping, crunching and the extreme fatigue (adrenal disfunction) I’ve been in the sea and pool and can confirm the cold water therapy shocks the system and alleviates the anxiety temporarily. It’s much better than cold showers. The effects were really powerful initially and I thought I was onto something but like everything it fell away. I’ve been a meal for the mosquitos quite regularly"every few days in fact and I never got bitten priot to full blown pfs " I think it’s to do with the estrogen dominance (bites are more common in ovulating women) this seems to be evident in me when the T and E are competing for what receptors I have left. When they’re at odds/under stress is when the damage occurs. I was baptised in the sea 2 weeks ago and have been praying and reading the bible daily. It does bring inner peace for a little while. I was in an emotional storm on Friday I was numb to my surroundings in the local supermarket, I was extremely distressed, irritable, tearful and defeated at the same time. I felt physically weak, and disorientated , my teeth and bodily pain were terrible, couldn’t make eye contact with anyone, wanting to withdraw etc, cortisol had me in fight or flight… When we got home I grabbed the Bible and stuck with it, an hour later the fire was doused when I returned to my shitty baseline its very useful for bringing you back to earth when in an extreme hormonal state. The constant feeling of a hollow painful skeleton, glass legs has abated at times while here.(the bone demineralisation) but I’ve developed very sore knuckles, lower spinal painful disks and trigger finger has appeared. These are menopausal symptoms. My son was in tears vi’a vid when he knew he wouldn’t see his Dad in person for Xmas. I’m missing him dearly though I do see him via a vid call most days. Its somewhat of a trade off, being in SA with my sister for her support where the weather is good and I have a place of safety and the local church who are fantastic in terms of trying to help me- they are beautiful people. . I will look at the possibility of a medical exemption after Xmas for travel to see if I can side step quarantine. A few of my sisters friends have commented seperatley on the further noticeable loss of muscle since they last saw me. (2 years ago when I’d already lost a lot of size, shape and weight) One final thing I had a tel app with Imperial collage London where I explained my extreme fall out from the recommendation of a very small dose of Wellbutrin and Cailis which were immediately stopped. . The Dr who is very understanding and a confirmed pfs believer couldn’t understand the reaction. After I explained the damaged dopamine mechanism and gene expression problems we suffer from, she was receptive said she’d look into it (id previously provided the gene expression paper to her colleague) She is very nice and stated they get a number of desperate men dropping into their clinic pleading for help. I explained my temp bounce from the 2nd covid jab which she found very interesting and agreed to speak to her team to see if they can direct an immunologist my way. No promises though.!! I hope this update is of use to someone. All the best Laz

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Stay strong brother. You’re a true warrior to be able to push through all these symptoms.

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Ryan, you’re too strong

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Another brief update, I woke at 1am this morning I was uncontrollably hyper ventilating, my hands, feet were locked, clawed and my back arched with extreme anxiety, cognition all over the place, chest pains and soaked in sweat. It eventually passed so I lay in bed until it was time to get up. Stabbing pains have developed across my body tissue, head and eye sockets with the onset of testicular pain along with all of the usual daily sides that permanently sit on me…Tinnitus was through the roof too from the neuro inflammation… Last week I had a nice meal but suffered a degree of fall out(sweats, disorientation, confusion, distress) I thought I’d try it again to see if there was a correlation and this happened. I expect it was rhe cooking oil as there was nothing on the plate that was bad for pfs but the food was swimming in the oil. I’ve become increasingly and extremely sensitive to 5 ar inhibitors and more. Does anyone else have this degree of fallout from 5ars?.
I often wake from a nightmare which indicates a spike in cortisol, adrenaline combined with low dopamine and on the over expressed receptors shocking the systems into an extreme fight or flight awake state. Its unbelievable that I’ve become accustomed to this and try to context it even though I can see its causing more damage. The late Robin Williams described all of this but sadly never made the connection to taking finasteride he must have been out of his mind. I just got up and feel light headed, unsteady, disorientated and physically weak with bone and muscle pain everywhere.(low dopamine symptoms) I’ll push on.

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A food high in turmeric made me bed bound for a week recently, couldn’t even focus on my mobile screen, i get this severe hollow feeling in the middle of my brain whenever i get exposed to 5aris which makes me feel like a 90 year old demented person when i walk.

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I’m awfully sorry you are going through this. You are tough as nails. I deal with some of what you describe as well. I wake up in a panic all the time or will even get shocked awake right when I am nearing sleep. Where did Robin Williams describe these things happening to him? I hope you can get some relief Laz

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