It’s been eight months since I’ve had PFS. Unfortunately, my situation is very serious and it is getting worse, I do not know what to do with this horrible situation. My physical condition is dramatic, my bones hurt, my bones have become thinner, my skin is left draped and totally without any sensation. Exercise does not help, I feel very tired and lifeless. Sexually a nightmare. The sentimental situation only worsened my condition. The woman I love wants me dead and has no compassion for me. It is the most wicked woman that exists. My doctor Daniele Santi can not be found for a prize that has been awarded to him, and in any case he would not give me any solution to the problem except the cards. I’m writing a book about my life, I want to finish it because I think I’ll be dead soon and someone will really have me on conscience. Ciao my friends
I’m glad that you are writing your story down, you should document things from your case.
It isn’t necessary to be so fatalistic about your life however.
Is Daniele Santi the only doctor you will see or would you see another?
if you’re sick of waiting for improvements and things don’t seem to be moving along, why not try a few treatments and see how it goes? Obviously the wisest thing to do would be to simply wait, but if that really doesn’t seem like an option to you and you are truly at the end of your rope, it’s probably better to try than commit suicide.
We’re all around if you need us. If not me, then someone else. And if not someone else, then another person.
Why don’t you try to do something relaxing or simply different and unique to help take your mind off of the situation such as:
-Meditation or wellness retreat
-Cold showers (not relaxing but feels great after)
-Vacation to a warm climate with great nature scenery
-Float tank (meditation on steroids)
-Read the Power of Now
-Light incense and candles and drink a glass of wine
-Get a cat or puppy
-Get the hell out of bed when you wake up and look at sunrise
“Motion creates emotion.”
“Our living is determined not so much but what life brings to us as by the attitude we bring to life. Not so much by what happens to us as by the way our mind looks at what happens.”
Yes, hopefully there will be a direct treatment for this condition, but remember you can also attack from the periphery and there is plenty to live for and try out outside of “treatments”
I do completely agree with you regarding there being more to try out than the therapies that people have attempted, including the ones you’ve stated, some of which i’ve done personally to cope. At some point however some people just completely lose hope and are driven over the edge simply. Just the idea that if things do get to a completely unbearable level, there’s something to do besides suicide, regardless of how it ends, might help him find motivation to continue on another day.
New user here just wanting to give my opinion as well. Don’t give up. Try moving to a different location with different doctors. It might give you a new perspective on life. Lots of things to enjoy not just sex.
I take you life in italy so try:
Telefono Amico: http://www.telefonoamico.it/ 199 284 284
Samaritans onlus Italia: http://www.samaritansonlus.org/ 800 86 00 22
Damon, please do not give up. You are still relatively early in developing this condition. You will probably still see natural improvements given enough time. There are also many intelligent people working on finding a therapy for this. There is the survey launching soon; the data gleaned from this will be used to advance our case further, potentially being vital in securing major funding for further research. There is also the Baylor study to be published soon. This could be the most important study so far in gaining an understanding of what has gone wrong and lay the groundwork for really specifying where the research should be heading.
People who know a lot more about biotechnology than me are optimistic about the possibilities of the field and even unrelated medical news I’ve read recently in mainstream news sources points to an acceleration of medical advancement and, crucially, the cost price of these technologies is becoming more affordable.
Remember you’ve got all of us here to talk to and keep your family close. Please take care mate.
Sorry to hear that Damon.My brother still feels worse day by day.I tried to make a dna test for him in the laboratory 23&Me on Usa,because we are from other country.But they don’t make ships of the kit to our country and travelling won’t fix the issue because now they demand that ONLY usa citicenz can ask for their service.We don’t have double nacionality and the requirements for it are ridiculous.
Hey man DNA tests don’t diagnose you with anything. Their purpose is to tell you your ancestry.
What we’re trying here is to see if we have genes in common that may be mutated/non dominant and give rise to PFS. Don’t try to go to USA just for a 23&me kit, it won’t cure you or tell you what’s wrong.
Seems like someone could help in shipping the sample tube thing to him and then into 23andme. Obviously, this isn’t going to be a diagnosis. Maybe it helps in the big picture but it isn’t like this is some miracle cure…
Hi there smallballsbighope.
First of all what have ancestry to do with health? Because the laboratory itself says “Discover what 90+ personalized reports have to say about your ancestry, health, traits and more.”
My brother didn’t get better.But i don’t want to give details here.I’m gonna do it in the main post “urgent help”.
I’m sure that my brother have some serious issue in his body.Is not normal.
I’m sorry you’re going through this. What I’m saying is that the 23&me test offers you ancestry findings based on your genetics. It also gives a health report, too. This health report only tells you if you’re a carrier of certain genes which are more likely to give you disease. It does not tell you if you have disease currently.
If you could contribute to the 23&me study, that would be awesome. If you can’t do so conveniently, which appears to be your case, I wouldn’t worry about it, man. It’s not going to help your brother in the near future.
Just want to confirm what was said above and clarify a couple of things:
This is not a diagnostic test of any sort and will not be able to diagnose or treat anyone directly. It is a project that has the chance of revealing a key insight into the predisposition of the condition, which if found would be a remarkable discovery. It is, however, only a chance - this is not providing us full genomic sequences and normally GWAS are conducted with larger data sets than we have or are likely to receive.
Only data from the 23andMe service - like for like SNP selection - can be submitted. Either 23andme tier is fine as it is the raw data we willuse.
Please do not stress yourself about not being able to contribute. Other patients have and we hope will continue to (we would really appreciate some more post-accutane profiles, incidentally, for any post-accutane patients reading this).
We’ll be doing what we’re doing regardless, with the support and submissions of those who are able to.
Hello Damon, we all measure well enough the difficulty, the misunderstanding of what you are going through. Know that for PFS, 8 months is not a very long time and a lot of things can happen: your body can recover “naturally” but it takes more time in principle, you can try some protocols, … I understand that these dark ideas go through your mind because they all meet at one point but you’re not alone and I think a lot of people here will accompany you. I see a little Italian flag next to your nickname, did you contact the Italian Association, they can also advise you. Hang on Damon