Diagnosis

help with getting a diagnosis

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Re: Diagnosis

Postby kittycat » Sun Jan 09, 2011 2:05 pm

Thanks maisie,
I think VSL is the one to try, Dr seemed to think it was sold in Boots, so that may save postage at least. I said to him that I was always worried that a powder wouldn't get thro the digestive juices, to reach the intestines, but he was finding me really annoying by then, and just frowned at me!.. He's a positive person tho and I feel he'll do his best to help. love kittyx
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Re: Diagnosis

Postby smelly » Sun Jan 16, 2011 7:52 pm

kittycat you deserve a medal for persevering to ask all those questions, I usually curl up and die after the first withering look from an overpaid medical 'proffessional'!
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Re: Diagnosis

Postby kittycat » Sun Jan 16, 2011 11:45 pm

He'll be ready for me next time....I'm expecting a G Norton type ejector chair...Kx :o
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Re: Diagnosis

Postby merkap » Mon Jan 24, 2011 12:00 am

The specialist I went to – at the hospital – have now responded to my ”own” lady doc and she mailed me very kindly a copy of this message to her.
The specialist says he have to educate himself about TMAU as he never have heard about this illness before. Then he will get back to the patient (me).

Someone on this forum said earlier something about “this is what we are up against” and that is really true, we are surprising every doc about TMAU – and some of them even think we are imagine things to our self.
Have now not much hope that this ‘specialist’ can find anything useful for me but at least he is considering a proper TMAU-quota test.
And perhaps in the future a DNA test – maybe.

So I am a little down at the moment.
Luckily the outside temperature is rising and I’ll try to be out more, the increasing length of daylight (one hour since Christmas) and the sun reflections on our white stuff are good for the mood and the melano-something I heard.

Take care, all.
/ merkap
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Re: Diagnosis

Postby kittycat » Mon Jan 24, 2011 12:37 pm

Ahh merkap, don't be down..... Spring is nearly here, crocus' are showing, and the birds are flirting... come on Magsie, write us a hopeful poem :D

May I ask, do you follow the diet and take probiotics? At least you've brought tmau to the attention of some medics in Sweden, but there must be more sufferers... Aren't there any forums or support groups set up? Have any other Swedes contacted you through the forums? Sorry if I've missed you talking about of all this, but when (and why) did you realise that you had odour probs? Big hugs teddy, Kittyx
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Re: Diagnosis

Postby merkap » Wed Jan 26, 2011 8:09 am

Really nice to have such a sparkingly positive person as you Kitty here at the forum!
Makes me feel a little bit better – placing things in the right context.

Well, there is no Swedish TMAU web site, at least not to my knowledge.
But if only one tenth of a percent of the people I Sweden does have this illness there should be - let’s see – well, really many sufferers and that should be enough to have a big Swedish web site. Even if only few of them should write regularly on the web site.
And if the closest Scandinavian countries are included the presumptive member numbers should increase.

My problem – when thinking back – was in fact observed when I was ten-twelve years old. The disease had no name at that time I think but was clearly noted by my classmates. And that is now depressingly many years ago.
Well, now I have you guys to talk to, thank you so much.
Big hugs back Kitty, take care all
/merkap
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Re: Diagnosis

Postby kittycat » Wed Jan 26, 2011 12:21 pm

Thanks for replying merkap, we're lucky to have you too. :) but we can't help you with docs, and help, in Sweden. The fact that your odour began so young suggests primary, so if you are diagnosed with that, I'm sure the gene specialists will be very interested in you as well. Do you know where your ancesters came from? And, looking back, were any of your parents relatives possibly affected? I might be 'jumping the gun'...you might be a boring ole 'gut flora overgrowth' person, like me!
You didn't tell about your diet...Is it all roll-mop herring and meatballs, (like they serve in my local Ikea)?...Just ignore me again, if you find me intrusive :D
It certainly helps to talk. And I still wouldn't be able to talk about it, unless Lisa hadn't contacted the media which led to Claire appearing on telly....I know you're shy, but could you make the phone calls/write the letters and be the catalyst that makes things happen in Sweden?
Our snow is all gone and we're back to the grey drizzle....Kittyx
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Re: Diagnosis

Postby merkap » Fri Jan 28, 2011 8:34 am

kittycat wrote:.............. but we can't help you with docs, and help, in Sweden.....Kittyx

Yes Kitty, I know that.

Now received a message from the hospital doc. He tells me that the new pee test showed positive for TMAU. They call it a "sniff-test" he says, "but it is a biochemical determination procedure"!
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