Your findings by the way are interesting.
But, what do they mean? We cannot use those compounds therefore the body gets rid of them through urine?
So generally speaking I’m looking for patterns in any of the urine steroid metabolites or neurotransmitters that are included in the test. And if we can continue to see patterns which based on the way things are looking now we are seeing patterns then hopefully this will encourage the experts to explore further on the neurotransmitter/neurosteriod path.
One direction I’m going with in my thought process specifically when it comes to the Allopregnanolone and DHT is that maybe these two things are high in the urine in 5 out of 5 Fin/Saw P guys tested so far is because the body does not want to use them. Melchangi’s 2014 neurosteriod study showed lower Allopregnanolone in the CNS compared to the control group. But yet we have 5 guys with either flagged high urine Allopregnanolone or high range urine Allopregnanolone. So I think based on the info currently available it’s a reasonable thought
We have two more results coming in soon. So that will make seven different fin/PFS results once they are back. If they both have high or highish urine Allopregnanolone and DHT one of the next things to start thinking about may be to try to have 7 non PFS people to take the test. Our control group sort of speak. And if they don’t have high urine Allopregnanolone and DHT then it sounds like we are onto something solid
Apart from encouraging the tests just for independent research attempts I’m going to be using them to attempt own protocol for my self. I’m going to pee every two weeks while constantly updating and changing the amino acids and co factors per my most recent results. Two guys years ago on this forum tried this following the advice of some type of neurologist with decent sounding success. However they were paying a lot of money to the doctor out of pocket because he was like a functional medicine type doctor. Because I can get the test without a doctors order, can interpret the results and adjust the amino acids accordingly I can do this my self for much cheeper. I’ll try to find the thread
Well, I think the lab range has to have some sort of statistical base. So I mean, it would be unlukely to say the least that a group control would show similiar results.
Yes I agree . and ZRT tests are supposed to be accurate based on their creds and rep. But still if we have values on paper in all of us that non PFS people don’t have this will be compelling. And my objective is to show someone in a position to do research that can be published something compelling
My vision is a massive PFS study that consists of CNS, blood and urine tests of all neurotransmitters, amino acid levels and neurosteriods. I’m talking groups of hundreds of people. Screw this 6 person study bull shit
So if I get it my way this whole forum will get a urine neurotransmitter test. So if this pattern is huge in hundreds of us we can use the results to get Melchangi or maybe a research institution here in the US to make my vision a reality
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@Papasmurf I’m so sorry this is happening man. Can I ask.how much sodium butyrtae you used and for how long???
I am very sorry for what you are going through. My brother was diagnosed with early Alzheimer due to most likely finesteride.
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@napleskitty really sorry to hear this. How old is your brother and how long did he take it for. It’s unbelievable what this drug can do.
@Papasmurf How are you doing now, did doctors test you for anything and have the tests resulted in anything conclusive?
I’m sorry to hear this.
Could you tell us something more about this story? How old was your brother? How long did he take Fina for? Any chance somebody else in your family got the same diagnosis?
Why do you think it’s Fina related?
Continuing to lose more and more strength in my arm which is now completely numb, it seems to have spread to my neck and front right leg which is hard to maintain balance, also having fasciculations all over my body and complete sleep dysfunction haven’t slept in days, finding it increasingly hard to breathe as if my lungs are closing up and I’m constantly out of oxygen taking deep breathes. I’m dying I can feel it I’m moving home soon to be cared for by my parents as I cannot look after myself no more in this state it’s becoming impossible.
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Man, ALS does not progress this fast. And it doesn’t make your limbs numb.
Have you seen a neurologist? Did you get an MRI?
What are doctors telling you? How can you have such severe symptoms with no clinical evidence?
Dear Ryan! I recived pfs this year from Feb to April I Took Finistarid. I chrashed over the easter days. Lost my Love Like you. Numbnes in the limps, muscle loss, followed soon. Sometimes hard to breath. Weakness over my whole Body. For the devil it is unbelivible how fast we loose all our abilitys. I don’t think this is ALS, this are typical pfs symptomes. The mild cases don’t have any muscle and nervous problems. The severe cases are we with muscle atrophy and the mental and Sexuall problems. F…ck we took this pills.
I love you man I pray for some kind of intervention from upstairs for us. Medically there’s no help. We seek acknowledgement in the hope someone can help. Desperate times. Only a few know how bad this can get.
I crashed severely from Finasteride that hospitalised me but crashing my estrogen receptors took a manageable situation and amplified it to the point that it is killing me. I’m dying, I can feel it, nor am I exaggerating, it is effecting my lungs feels as if someone is holding me tightly around the waist and crushing me. I’m dying lads
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Don’t give up, we are all with you.Although my symptoms aren’t as severe as yours, I can understand the feeling of twitching of muscles, weakness in the limbs, and numbness.We can’t let PFS beat us.You still have children, you still have a good life
@Papasmurf you don’t have to convince me I know how bad this is. I pray you have more time left and some sort of restbite come your way.
Do you stay at your parents now? To get some Help? Thats the only Thing, to get some Support, being Loved.
Hey man
As hard as it is yet getting up and moving around . Don’t lie down and die. Obviously you don’t have control over this situation. But don’t lie down and accept it . Go for a ten min walk . Get the blood flowing. Do this and see if it makes a difference . I would consider maybe starting creatine as well to fuel the muscles and drinking a ton of water . Gallon plus per day . Get moving . If things are shutting down over ALS unfortunately you have a dark fate and that’s horrible. But if your brain is shutting things down due to being imbalanced or for what ever unknown reason and it’s not a “disease” per se then you want to get everything moving as much as you can.
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After my crash from sodium butyrate I could no longer do any sort of exercise, it has done serious damage to my brain anytime I walk now I get severe pressure in my head, loss of balance, rapid heart beat, extreme anxiety and it will put me in bed for weeks. I have lost feeling now in both my right arm and leg and feel as if my lungs are collapsing, I can barely breathe most days. The nearest appointment I can get to see neurologist privately is December. This thing is killing me.
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Hello Ryan @Papasmurf Your family doctor can give you a Hospital admission to the department of neurology and I think they have to treat you than. Or in a case of an emergency you can visit the ambulance of a hospital.
pfs is not listed in the ICD 10 so your doctor has to use Y57.9! Undesirable side effects in the therapeutic use of medicines and drugs
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