Meet Up - Anyone around Woking (Surrey)?

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Meet Up - Anyone around Woking (Surrey)?

Postby dev » Sun Jun 16, 2013 4:44 pm

I need to meet up with someone with TMAU.

I need to know how is my smell. All I hear is loose words from people, but nothing I can trust. Every time I go to a doctor, they ALWAYS say they don't notice any smell. It is always the same story. I need to know the truth from someone with TMAU because I don't find much help out there.

I have just read this thread viewtopic.php?f=3&t=871 and it looks pretty much my case.

I would like to have a coffee with someone from Woking (Surrey) or around Woking. Please.

Male, female, any age. As long as you have TMAU, it's fine.


BTW, I am 40, male. (if that matters somehow)
dev
 
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Re: Meet Up - Anyone around Woking (Surrey)?

Postby Lisa » Sun Jun 16, 2013 5:34 pm

Hello again,

Answered your Q on the other thread, according to what I have read, other Tmau-er's cant smell each other, I take it you can't smell yourself?

I'm sure there will be someone near you who'd be willing to meet -up.
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Re: Meet Up - Anyone around Woking (Surrey)?

Postby dev » Sun Jun 16, 2013 6:08 pm

Obviously I can't smell myself.

About others with this condition not being able to smell each other, I think it must be a wrong assumption because people can't smell others with the same smell, but we have said TMAU can give different kinds of smell. In that case, I wouldn't be able to smell someone with exactly the same kind of TMAU, but I will be able to smell any other variant.

That's my theory about it.
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Re: Meet Up - Anyone around Woking (Surrey)?

Postby flashy » Sun Jun 16, 2013 7:06 pm

I am from Wales that's a bit far for me!! Anyone from South Wales area? X
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Re: Meet Up - Anyone around Woking (Surrey)?

Postby atlantis » Sun Jun 16, 2013 7:31 pm

Hi dev im in epsom not a million miles away , happy to meet for a coffee on a Sunday (have a nosy chatty child) know two others who live in Surrey we could have a mini meet up
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Location: epsom

Re: Meet Up - Anyone around Woking (Surrey)?

Postby dev » Sun Jun 16, 2013 8:10 pm

Hi Atlantis

Please, correct me if I am wrong:
You are diagnosed of TMAU and your 4-year-old daughter does not have it.

It sounds good to me. Epsom is not too far from here. It can be an interesting meeting.
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Re: Meet Up - Anyone around Woking (Surrey)?

Postby atlantis » Mon Jun 17, 2013 7:21 am

Thats right I have been diagnosed an my daughter is symptom free , tho mine didn't start till early twenties .am praying this never happens to her the dr said it s highly unlikely - they could do a simple blood test but don't seem to be interested in goin down that avenue - not being funny but it might help them learn something more about this condition or at least put my mind at ease ! Am worried as I know another lady with it who also started in her twenties now her daughter has developed it in her early teens so its not without cause ! Guess I have no option but just wait and see!
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Re: Meet Up - Anyone around Woking (Surrey)?

Postby PoetFire » Mon Jun 17, 2013 1:21 pm

dev wrote:Obviously I can't smell myself.

About others with this condition not being able to smell each other, I think it must be a wrong assumption because people can't smell others with the same smell, but we have said TMAU can give different kinds of smell. In that case, I wouldn't be able to smell someone with exactly the same kind of TMAU, but I will be able to smell any other variant.

That's my theory about it.


Hi Dev. My own theory for this selective anosmia is that people with a weakness in the same enzyme may not be able to detect well the same metabolic smells from a fellow sufferer. This would include carriers. In the case of FMO3 enzyme this means many sulfides and amines of a certain structure, many of which are sourced from the colon. However at the moment professionals are only prepared to accept that trimethylamine is the only 'harmless' metabolic malodor condition.

Strangely, I expect to smell these sulfides and amines except when they come through human skin. Perhaps the brain tags these odors and is programmed to ignore metabolic odors or something (if having the same enzyme disorder). At the moment it's still a bit of a mystery

Also I think most people are transient but if you can't smell it then it's a worry all the time. Just my current opinion.
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Re: Meet Up - Anyone around Woking (Surrey)?

Postby idealist » Tue Jun 18, 2013 5:30 pm

Gosh I have not been on here for so long , I almost doubted what my user name was, and forgot my password lol! Anyway, has anyone thought about setting up a meet up page on Meetup.com? I am too much of a flake (unreliable) to even consider this maybe someone on the sight has a more reliable personality than I..It could be nice to welcome others that may not have TMAU but may have other similar struggles such as isolation, feeling embarrassed -or even just organise trips (not just about odour) and so forth. Anyway just a thought - I hope all goes well and everyone is in good spirits :D
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Re: Meet Up - Anyone around Woking (Surrey)?

Postby dev » Fri Jun 21, 2013 8:01 pm

This Sunday I am going to learn a few things.

I am really excited about this meeting.
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