Ok.....here it goes....

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Re: Ok.....here it goes....

Postby doll28 » Mon Sep 10, 2012 4:17 pm

Hello ,

I was reading your story and i just thought it was me.Do you live in London?Would you meet up me so we would share our bad experiences?

XX
doll28
 
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Re: Ok.....here it goes....

Postby silent_suffering » Wed Sep 19, 2012 7:47 pm

Hi everyone,

just had a quick read through all your replies. Haven't been on for a while as i decided to put it to the back of my mind whilst my children were home for the summer hols. I wanted to have my daughter and I tested before her new school year as i mentioned before but i figured referal times etc it probably wouldn't have happened and as i was going through a really bad time with this i just wanted to forget about it (as best as i could). I will come back on in a few days when i get a chance so i can try and work out where to go with this.

Thanks so much to everyone who left a message it means more then you could ever know :)
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Location: Hertfordshire

Re: Ok.....here it goes....

Postby noreen » Thu Oct 25, 2012 9:13 pm

HELLO
I couldnt pluck up the courage to visit the GP but when i finally did, the locum just dismissed me even when I started crying in the surgery because I had half expected difficulty with the doctor understanding. So I asked I went through Biolab Medical who sent me information and the plastic pot - I then send the urine sample off to Sheffield as per the instructions given, and now have the diagnosis of TMAU 1. It cost £184 but I now have evidence in writing from the Sheffield clinic to give to the GP next week. An Expensive but stress free way of getting something in writing.
Noreen :
noreen
 
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Re: Ok.....here it goes....

Postby Lisa » Tue Nov 06, 2012 9:41 pm

Jeez, £184? I paid £160 2 years ago, and some people didn't have to pay at all, hardly fair is it?

Hang in there Noreen, my GP did a presentation on TMAU last year to his surgery, now when I go everybody knows about the condition, even the nurses.

In the next few weeks I'm hoping to see my GP to ask him if we could print a leaflet/poster, to put up in the surgery re TMAU. Fingers crossed.
Lisa
 
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Joined: Tue Jul 06, 2010 10:35 am

Re: Ok.....here it goes....

Postby egglover » Fri Nov 09, 2012 11:02 pm

Wow Lisa...you've got a good doctor :D
I wish there was more awareness as I believe TMAU is much more common condition that is currently thought. If more people got diagnosed then hopefully more funding would be available to fund research into an enzyme to help us. I live in hope...an eternal optimist :)
egglover
 
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Re: Ok.....here it goes....

Postby Lisa » Sat Nov 10, 2012 9:39 pm

Hi Egglover,

I got there eventually with the Doctor, I left my original GP of nearly 20yrs because despite the tests I had done, my GP couldnt find out what was wrong with me, so I changed doctors, it was with my new doctor I came across E/Bodies programme, and discovered TMAU, he sorted out the test etc for me, of which I had to pay, it then came back positive, and although my new GP was "interested" in this discovery, his help/advice soon waned, and one time I phoned to ask for a dietician, he told me he had patients that were ill, and needed his attention more than I did, and, on several occasions he wouldn't take my calls, so, armed with as much info as I could get, I registered back to my old surgery, and, as luck would have it, I managed to get back with my original Doctor.
I walked into his room beaming, and told him my results, and that I had TMAU2, he was delighted that I had been diagnosed, and very, very interested in the condition, like others he had never heard of it, but, he took all my paperwork etc, looked it up on the interweb, and did a presentation on it! I was chuffed to bits. He now tells his students, and all new people he comes across, I told him to tell EVERYONE!

I will let everyone know how I get on with the leaflet/poster in the surgery, and I will also let you know how I get on with this CB12.
Leave it with me?
We mustn't give up!!!!!!
:D
Lisa
 
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Joined: Tue Jul 06, 2010 10:35 am

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