An update on where I am

@uniquo im sorry to hear this man. Where are you from? Complete your story and the survey it all helps. Does food effect you? Have you tried eliminating the stuff that worsens your symptoms. Getting outside for a walk taking in the scenery is as important as anything banish some of this even though just temporary. There are plenty of coping tips on the forum. You still have time to improve naturaly. Stay strong my friend your amongst a good group of people who understand, and its very positive that you still have hope.

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@LazarusRy i really appreciate your reply, im from tunisia in africa .the heart symptoms are scariest low blood pressure left hand numbness hand and feet flesh degredatiin and painfull veins popping out off my hand palm and feet .i feel like its permenant damage. i will stay strong .i get drowsiness and fogged after each meal no matter what i eat. i will test my dht and test once again and i will try every thing i get my hand on in my county . only our god knows what we are going through and only hope is keeping us alive
hope the best for all of us
think this member @JRB2003 is hit the same way. shame we cant know what happened to him

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@uniquo I used to get the numb hands and disregulated heart and painful veins as well as dizziness where i thought id hit the floor. Id try pottasium rich foods which worsened the situation ā€œreceptorsā€ i think in my case anway im also sensitive to trace elements and vitamins. I fully cut out pottasium for a few months and these symptoms became less frequent. Its insane what this disease does. We display symptoms of multiple deficiencies but because of the receptor issues any attempt to fill the void actually makes matters worse. Its a vicious cycle. Try dropping pottasium!! Its great that you have faith. Its very important to me and has provided me with comfort during many a dark hour.

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i dont get itchy scalp or feel any dht my hair dont fall like it used or even close .believe me when i pray for it to fall. i tried eating banana and potato i think it caused more damage. when i wake up after 1 or 2 hours i get some extreme pain in my lungs wich i believe is a damage .even my finger veins popped.hope its a transition phase to recalibrate
@LazarusRy did you tried dht

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Me neither

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I havent tried DHT. @uniquo

we should try i think .so we experince how it feels like . for exemp scalp itch hair fall mental. im very sensitve to anything almost right away i can tell if its doing something . problem with hormones are sustanblity .at leat we try .maybe a new baseline.

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Im afraid of further worsening what feels like an already perilous position. Saying tbat im going to give wellbutrin a try. Iā€™ll know immediately if i have to throw it in the bin. Like u reactions are quick

if i can get my hands on .i will try for 1 single time then wait some days.just to experience how it feels.who knows it may shock the system

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Some believe our systems need that shock to kick things back in. Good luck if u decide to go down that route but also be careful and stay safe.

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I thought I should provide an update on taking wellbutrin. After much negotiation with different doctors I was given a prescription. I took one half of a tablet 75mg. Within a very short period of time in felt a return of strength and wood ā€œit was intermittent, akin to a light switch being flickedā€ but it only lasted a short while. On the down side I felt aggression, irritability, the coldness I always feel spread from the extremeties to the full limbs. I had no sleep felt wired and soaked in sweat with heightened tinnitus. I also developed acute acid reflux. Most of this can be tied to high or low dopamine and as per usual brings me back to the sensitive receptor issue problem. Because of the fallout and fear of further permanent deterioration I decided not to continue with this. Thankfully I returned to my shit baseline a few days later. Additionally following a telephone consultation with an NHS urologist from London ā€œseperate postā€ who fully accepts PFS/PAS she suggested a low dose of cialis in order to bring around some feelings of being a man/alive/ wellbeing again and stated I should persevere for 5 days to see the full benefits. Once her accompanying letter lands at my doctorā€™s Iā€™ll get a prescription. Sheā€™s confident itā€™s relatively safe but felt the same about wellbutrin. To note I tried Viagra a decade ago and it gave me red devil eyes with a raging boner, hardly the ingredients for intimacy. Iā€™ll keep you posted on the calias. Thanks guys.

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I take viagra for sex but it doesnā€™t restore sensation at all so while it physically enables sex it doesnā€™t address the biggest problem I have, which is a sense of desire, connection, or ability to orgasm, all of which are pretty critical for any kind of relationship. Wellbutrin may have increased libido a very small amount, but not noticeably, and it has significant anti-cholinergic effects that in my case lowered IQ considerably and impaired my ability to work.

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@vkg1 thanks for the input, sheā€™s hoping it may help with desire, though I think itā€™s a far stretch considering thatā€™s been gone for years. My IQ is unbelievable now too, from someone who was once a very high performing individual, i view basic problems/tasks with a blank look and make mistakes in everything now! I canā€™t even work out the change I get from the shopkeeper. Did you also have to leave work?

I had to stop one important job while on Wellbutrin but became fine and back to work as soon as I came off it. My mental sides are gone except maybe anxiety. My problems are really just sexual now. But they stop me from getting married and having family which is catastrophic for me.

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I understand some of the losses are too hard to bear

Itā€™s been a few months since my last individual update. I really donā€™t take any pleasure in posting anything negative but have to be honest. Things have only continued to decline with a weakening and worsening in every area. Iā€™ve become thinner even small t shirts are loose. Iā€™ve had more facial fillers due to the increasing hollowness, my bones feel fragile like glass and pains are frequent and constant across soft tissue inckuding eye sockets, cheekbones . I have new dents appearing across my scalp. I canā€™t twist off bottle tops as itā€™s too painful because of the lack of padding. Weight training is going down the pan, even the occasional mild positive responses to exercise have stopped, itā€™s extremely difficult to continue because the weakness, pain etc with no results. I only do it to try to hang onto something. The stabbing pains in my head are daily. My cognitive state is worsening even further. Out of desperation I tried low dosage Bupropion and Cialis (sorry if spelling is off) seperately which only worsened things-the kind of stuff were all familiar with I met with a dental pain consultant who ruled out root canal surgery, incase of complications. I declined pain management meds to which he suggested alpha lipoic acid which again only inflamed my situation. X rays have shown new damage to my hands and lower spine. I have been told the multiple liver tumours are benign. (Something I suppose) further investigations have found a 2cm hole in my esophagus which is exaggerating the constant reflux. I expect others with long standing such symptoms may also unknowingly have developed the hole and benign tumours. Last week was complete hell I was gripped by chemically induced terror and trauma, my constant anxiety etc reached new extreme heights. I was trembling and shaken to the core by a feeling of trauma beyond anything Iā€™ve ever experienced. Tooth pain was at new heights and every symptom was motoring at full tilt. There was a dramatic shift in whatever causes this. My wife ā€˜though were separated tries to support me" as the week unfolded and she did not know what to doā€™ my sister in SA was frantically calling, all of my usual calming strategies werenā€™t helping. I really thought this is how it gets when you have no choice other than to put an end to this. Despite all of this I still donā€™t have the balls to jump off a bridge. I was begging God to take me. I rang the CBT line to see where I was on the waiting list to only find no referral had been received. They assessed the situation and said theyā€™d get the crisis team to contact me. Later that evening they rang and said theyā€™d tried to get hold of me, The trained operator was horrified at my situation. He was very understanding and stated heā€™d send an urgent report to CBT to find me an impartial professional counsellor as I have no one to talk to who isnā€™t emotionally involved. A report to the Dr advising him he needs to take things seriously and proceed with actions heā€™s agreed with me is also being sent. Iā€™ve made it into a new week but really really canā€™t see how this can go on. No one outside of the forum can even begin to comprehend the gravity of this. Im not after sympathy just sharing for those who are tracking my journey. Somehow I still manage to hide this from my Son. Thanks for reading.

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Man Iā€™m sorry youā€™re going throught this.

Thank God the tumors are benign. Do you plan on undergoing surgey to have them removed?

Whatā€™s your next move?

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@TFD thanks for the k words. Consultant feels that surveillance is the right approach. Iā€™m out of moves. I can only hope that time is kinder to me

The worst part of the whole ordeal. No feeling of control whatsoever.

Thatā€™s it 100%. Hope youā€™re doing ok yourself

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