The first two days I left bedbondness, total fatigue and Major Depression. Thats a big step. Hope to get the power to start to live again.
From the stories from bedbound being to weak for everything I’m totaly shocked. I don’t want this.
My doctor didn’t even mention me important tests, just told me to do total Testosterone and cbc and kidneys. Didn’t tell me to do any tests for cortisol, e2, thyroid, free Testosterone etc… when i did my e2 test on my own, it was elevated, so was free t4. Doctors are shit.
There’s no therapy session for pfs ! They will give u clomid or trt nothing else.
My Doctor treated many other pfs sufferers. I Hope He did the right Tests. Hope He has the right ideas. I keep than in my House Like a 70 year old grandma doing the Household Sitting on the Terrasse, making a Walk allone. For social interaction even going to the Supermarket im to afraid. Sometimes I must. The other sufferers are much Younger than me and live with their parents.
Reaction of TRT and TRT. The only Symptomatic Therapy. Get normal again or have No Chance. But May be there are some treatment against muscle los an Neuroendocrinological damages.
And how many got cured or atleast doing better? Talking about severe cases not ED.
I don’t really know. I try IT one time in the beginning, when nothing is like a Chron disease. I already know that ED ist permanent, there ist only the chance of an Titan Inlay. But First Im afraid of muscle atrophy. To get bedbound. To get totaly weird about my new situation. So If there are some little results to life a normal live again, I m very Happy.
Like running arround in the moment, maltreating my ex woman and mother of my child with my suicidal thoughts ist creazy. And for six weeks getting assitance by my new Love, who Played nurse and Mom, instead of Sex is an unaccepteble Situation. She lost me. The Rest of the time I stay Here. The best thing I stay outside at the Terrasse, Not staying in bed anymore. May be next days I go for a walk, make a bicycle tour. And getting able again for organizing my live and confront social interaction. Hey @anon74895881 we’re are you staying right now? In a lonly flat, or in a House with your Family?
Hey Sir, i live with my brother, i don’t have anyone else.
If the problem was just about dead receptors, wouldn’t the condition be always transitory? Aren’t receptors beign replaced all the time?
It’s not that simple, i wouldn’t say they are just “dead”, it has become severely mutated and it was proven in a paper which @awor used to mention, i can’t get it right now.
From where did u get this theory of receptors being changed all the time?
U won’t believe in receptor theory unless u are a severe sufferer, becoz then u will respond to trt and say that pfs has nothing to do with receptors, but it doesn’t change the fact.
Aren’t cells in our bodies constantly replaced?
Man, please, I don’t want to argue. I just asked a question.
Monday I will recive all the test results hormons, muscular myopathy, diabetes at my doctor. I’m afraid of a disaster caused by my abuse of this f…cking pills. Hope he will have an Idea stopping muscle loss. First of all. I have to make a little walk three times a day. I have to stand up 8 am doing my household, going to the market, visiting the physiotherapist, going for a walk, bicycle tour…
But I m weak and my legs are tumblin…
@basementdweller Good to know. TRT Gel and hCG injections and keratin against the mitochondrial myopathy.
Do you know which member had the muscle biopsy to determine mitochondrial damage? I’m honestly thinking this is what I have, and am absolutely petrified because there is no cure.
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I remember seeing it, there wasnt alot of conversation about it.
I have a rheumatologist appointment coming up and I will see if I can reschedule a muscle biopsy I was originally going to have done a couple years ago.
I just created another topic looking into this as well from the having taken Accutane perspective, where I am just as interested in altered retinoid metabolism or function as some are with androgens.
I also want to have the muscle biopsy.But I’m afraid that muscle biopsy will hurt my body again,and even if we have a diagnosis of mitochondrial myopathy, it might not make sense because there is no cure.
im in the same boat too
i dont have any doctors to indrestand me in my country
how much trt should i take and how l9ng for it to work