I’ve posted a similar message on MedHelp.org.... it has been about 5 y since I got this smelly gas or wind leaking nonsense disease, I know I am not alone now after reading many similar stories, I actually felt relief a bit that I am not the one and only, but I got depressed that no one has found a cure.
As you know its a very complicated problem that no doc knows about it, I have visited tens of docs, but no one has a clue about what I am suffering from or what is going on.
I think becuz there are not many ppl have it and maybe its a combination of many issues & disorders that affect different parts of the digestive system and cause this disease or issues!
So, since the docs do not know this case even exists I wanna suggest smth maybe will help us to get the right treatment';
I have heard that there are lots of help groups in the UK that can support and help ppl with TMAU to find the best way to deal with their problem (TMAU). They also interact a lot with the scientists working to find improved treatments.
So why not we do the same thing(I mean making a group for this new disease under group of doctors in one hospital at one place ) , cauze there are a lot of benefits of it such as;
- doctors will finally understand what we are dealing with and believe us, they can’t deny our problem or just send us to psychiatrists!
- we can share our problems, support each and other become friends, I personally have no friends and I feel so lonely and heart broken.
-if one of us get over his problem, this, will help the rest to know exactly what is the nodus that cause the smell or the other symptoms, I mean it will be easier for doctors to diagnose the disease and easier for us to work on the healing process even if it takes a big effort and long time
we shouldn't live the rest of our lives in this situation, I have read a story about a man who is still having this prob since he was 20 y o, and now he is 40, he mentioned that he has no wife no kids and never had a girlfriend during his life
. If you have other suggestions and solutions for how to get over this awkward sickness please share your opinion and reply, at the end we have to do smth about our miserable lives & take action... heartbreak and bemoaning won’t help.
Life is great, but we want to live it