no luck getting diagnosed

help with getting a diagnosis

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no luck getting diagnosed

Postby leedsunited1992 » Thu Feb 03, 2011 4:16 am

still having trouble with it ,seen a metabolic Dr who had to goggle it to found out what it was then laffed it of and says its could be cos am a hairy person and said everyone in world has a unique smell to them,cart really blame the Dr cos who has heard of this condition I hadn't until I saw it on GMT. .so now am thinking of going back to my GP who must be getting sick of site of me and asking to be refereed to Dr manning at sheffied 4 a test , has any gone down this route and asked to referred to sheffield and will the GP refer you if you ask eg can they say no or is it a law that they do



thanks
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Re: no luck getting diagnosed

Postby Lisa » Thu Feb 03, 2011 11:24 am

Hello Leeds, you are not the only who has had this problem. Yes, go back to your GP and say you'd like to be tested for TMAU, get as much info as you can to show your GP, so he has all the facts. My doc had never heard of it, but he certainly has now, you have to be persistant. You might have to pay tho. If you still have no luck with your GP, mention the words GMC, that should gee him up. ;) . Good luck, let us know how you get on.
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Re: no luck getting diagnosed

Postby stinky17 » Thu Feb 03, 2011 5:50 pm

hello leeds my doc had never heard of it n i went n told them i saw it on emmarassing illness n i wanted 2 be tested 4 it n told him that nigel manning does the test at shefeild childrens hostpital......good luck!
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Re: no luck getting diagnosed

Postby leedsunited1992 » Fri Feb 11, 2011 5:19 am

thanks Lisa and stinky17 going to back to GP ask to be referred

how much is the about if i have to pay ,love the idea of having to pay for a test that says yeah you smell lol
and what does gmc mean Lisa
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Re: no luck getting diagnosed

Postby Lisa » Fri Feb 11, 2011 11:12 am

Hi, I paid £160. General Medical Council, (GMC), head honcho's.
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Re: no luck getting diagnosed

Postby Ellie Girl » Mon Apr 04, 2011 3:16 pm

Guys,

See if you can get you GP to refer you to an endocrinologist. It takes a while but the endo will almost certainly have heard of the condition and you should be able to get your TMAU test for free. I had an excellent endo at Nottingham, and now I have moved to Bristol I have been referred to another one at Southmead.

Before I was referred to an endo I found it really hard to get any info on getting tested or on anything. I had a string of GPS who had never heard of the condition and who mostly weren't much help. I had to specifically request referral so that I could get a diagnosis so that my GP would agree to let me have antibiotic treatment. Mine was great. Provided me with everything I needed so I could sort the sample at home - all I needed to do was get it to the hospital and they sorted everything else out with the lab.

Ellie x
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Re: no luck getting diagnosed

Postby allterrain » Sun May 29, 2011 6:38 pm

That doctor you saw sounds terrible Leeds. My GP won't refer me either, and I can't afford to have a private test done at the moment.
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Re: no luck getting diagnosed

Postby PoetFire » Sun May 29, 2011 9:50 pm

You can probably see any Dr at your local surgery, so you could try and guess which one may be most sympathetic. Or even move to another surgery.
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Re: no luck getting diagnosed

Postby stinky17 » Mon May 30, 2011 8:39 am

were arranging a christmas party in york on a boat if any of u would like 2 come n meet others get advice or a friendly ear... £30pp buffet disco n drink every 1 with tmau so u can relax n let ur hair down if u wanna come let me know :D
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