Room for one more?

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Room for one more?

Postby LJNLindsay » Mon Aug 26, 2013 1:09 am

Hi everyone,

I've been reading the forum for a long time now, but have finally decided to emerge from the shadows, LOL.

My name is Lindsay, female 40 years old & currently living in the SW of the UK.

I'm (still) desperately trying to get my GP to let me take the test for tmau, though no luck so far. I've *only* been dealing with this for almost 20 years so why she won't take me seriously; I just don't know :-(

I'm tired of being told that it is a psychological disorder, & that it is all due to my depression, anxiety, social phobia & body dysmorphia.

My GP's reasoning being that a) the test is expensive & b) that it won't change how I feel whatever the outcome. I can, kind of, see her point, but the NOT knowing is driving me insane. Well, more insane than I am, already.

Personally, I don't think I have tmau &, if I did, I'm certain it would only be in its mildest form. However, due to the comments over the years; I just don't know what is going on :-(

Anyway, I'm sorry for this *introduction* being longer than I had planed, but I wanted to give you a bit of background so that you'd be sure I wasn't some troll...

I look forward to getting to know you all. God knows I could do with a friend as, due to the depression etc, I've not worked for 12 years, now. I live with my wonderfully supportive parents &, without them, I wouldn't venture out at all.

Cheers for now...

Kind regards,

Linds x
"When No One Else Cares; My Dogs' Still Love Me"
LJNLindsay
 
Posts: 70
Joined: Mon Aug 26, 2013 12:50 am
Location: Cornwall

Re: Room for one more?

Postby Lisa » Mon Aug 26, 2013 8:50 am

Hi Lindsay,

Always room for one more. :D

Your case sounds very much like most of us, if you read thru the posts, you will see that we all have had to push for the test, may I suggest you type off all the info you can, and make another app. with your GP, armed with lots of information, he/she, cannot deny you a test, some of us paid for it, I believe it's around £180? Either way, you need an answer. You need to be very persistant, move into the surgery if you have to. :lol:

You say you're from the Southwest? Me too, whereabouts are you? If you're not far away I would love to meet up with you, have never met a TMAU-er in real life! LOL.

Kindest Regards. X
Lisa
 
Posts: 412
Joined: Tue Jul 06, 2010 10:35 am

Re: Room for one more?

Postby PoetFire » Mon Aug 26, 2013 5:30 pm

Hi Lindsey

Another thing you could try would be to ask your GP to phone Dr Lachmann to talk about TMAU. I think this would convince many GPs to test.
PoetFire
 
Posts: 290
Joined: Fri Jan 15, 2010 10:23 am

Re: Room for one more?

Postby LJNLindsay » Mon Aug 26, 2013 10:02 pm

Hi Lisa,

Thanks for the reply :-)

I'm hoping to make (another) appointment with my GP in the next week, or so. Much good it will do me :-(

I'm currently in Cornwall. Where abouts are you?

Linds x
"When No One Else Cares; My Dogs' Still Love Me"
LJNLindsay
 
Posts: 70
Joined: Mon Aug 26, 2013 12:50 am
Location: Cornwall

Re: Room for one more?

Postby LJNLindsay » Mon Aug 26, 2013 10:06 pm

Hi Poetfire,

Thanks, I may well suggest that to my GP ;-)

Linds x
"When No One Else Cares; My Dogs' Still Love Me"
LJNLindsay
 
Posts: 70
Joined: Mon Aug 26, 2013 12:50 am
Location: Cornwall

Re: Room for one more?

Postby Lisa » Tue Aug 27, 2013 8:47 am

Hey Lindsay,

I'm in Bude, you anywhere near me?

L. x
Lisa
 
Posts: 412
Joined: Tue Jul 06, 2010 10:35 am

Re: Room for one more?

Postby LJNLindsay » Wed Aug 28, 2013 12:18 am

Hi Lisa,

I've sent you a PM

Linds
"When No One Else Cares; My Dogs' Still Love Me"
LJNLindsay
 
Posts: 70
Joined: Mon Aug 26, 2013 12:50 am
Location: Cornwall

Re: Room for one more?

Postby Maisie » Wed Aug 28, 2013 2:52 pm

Hi Lindsay

Just wanted to let you know that there's a biochemist at Treliske Hospital in Truro who knows about TMAU. My GP knows her from his training days and although he didn't know anything about TMAU when I first approached him, she did. I don't know her name unfortunately. The urine samples are sent to Treliske first and then on to Sheffield Children's Hospital for testing. You can probably tell from this I live near Truro!

You have to persuade your GP to let you have the test (I know mine had to ask for permission from the primary healthcare trust because of the cost) and then go from there. I've now had two tests via my GP and one through Dr Lachmann in London when I went up to see him. My doctor also took blood for the DNA test (he had to get permission for this too) when my first test result came back positive and it said it was probably primary TMAU. The DNA test came back as negative so I'm not sure whether that means I have primary or secondary now. :? I've been suffering from this since I was around 10 years old so I think I probably have the primary version.

It's a difficult thing to live with, I'm now 59 and have had it for a very long time! When you know you've just come out of the shower and yet you hear people making comments about how you smell, it's very hard to bear sometimes. Especially when it's people you thought liked you. But you learn to live with it and try to ignore hurtful comments (selective deafness I call it!!!) and do the best you can with the diet.

Hope this helps. My doctor has been very good and has always given me whatever I've asked for. I know from reading posts on here that not all doctors are the same!

Maisie x
Maisie
 
Posts: 69
Joined: Thu Aug 26, 2010 1:20 pm

Re: Room for one more?

Postby PoetFire » Wed Aug 28, 2013 7:15 pm

Hi Maisie, re your DNA test, I think they only look for proven faults in the gene, and especially look for the common ones. Since FMO3 is not a gene of much interest to the medical system (currently), it wouldn't surprise me if there are many novel faults still to be proven (they need to prove a fault in a lab), or 'compound heterozygote' combinations.

The FMO3 protein is made up of a 532 amino acid sequence (made up like a train track, e.g. A-G A-C C-C etc). It seems that people can have a fault on one side of the track which are not thought to cause a fault until proven, and if they have a few of these they could be 'compound heterozygotes' where little faults compound. Also perhaps some in our community will have 'novel mutations' which are yet to be proven.

The above is about the coding part of the FMO3 gene, but each gene also has a junk DNA part and even though the junk part has no purpose it seems that people can have faults in here that stop the proper formation of the protein. There could also be faults at the 'promoter region' of the gene. These will not be looked at.

So for the above reasons even though someone currently is not shown to have a fault in their DNA test, it seems the test is full of false negatives.

Still worth doing the test as it may show the proven faults in the coding region.

It would be best if the results sent to us gave us our own full sequence so that in future we may be able to look for potential faults as a group but currently the UK NHS lab prefers to pass judgement on the full sequence and sends just their opinion instead.

This is my understanding of the DNA test, subject to misunderstanding.
PoetFire
 
Posts: 290
Joined: Fri Jan 15, 2010 10:23 am

Re: Room for one more?

Postby LJNLindsay » Wed Aug 28, 2013 7:57 pm

Maisie wrote:Hi Lindsay

Just wanted to let you know that there's a biochemist at Treliske Hospital in Truro who knows about TMAU. My GP knows her from his training days and although he didn't know anything about TMAU when I first approached him, she did. I don't know her name unfortunately. The urine samples are sent to Treliske first and then on to Sheffield Children's Hospital for testing. You can probably tell from this I live near Truro!

You have to persuade your GP to let you have the test (I know mine had to ask for permission from the primary healthcare trust because of the cost) and then go from there. I've now had two tests via my GP and one through Dr Lachmann in London when I went up to see him. My doctor also took blood for the DNA test (he had to get permission for this too) when my first test result came back positive and it said it was probably primary TMAU. The DNA test came back as negative so I'm not sure whether that means I have primary or secondary now. :? I've been suffering from this since I was around 10 years old so I think I probably have the primary version.

It's a difficult thing to live with, I'm now 59 and have had it for a very long time! When you know you've just come out of the shower and yet you hear people making comments about how you smell, it's very hard to bear sometimes. Especially when it's people you thought liked you. But you learn to live with it and try to ignore hurtful comments (selective deafness I call it!!!) and do the best you can with the diet.


Hope this helps. My doctor has been very good and has always given me whatever I've asked for. I know from reading posts on here that not all doctors are the same!

Maisie x


Hi Maisie,

Thanks so much for your response, & helpful advice/information.

Actually, I feel a bit of a fraud because I'm not convinced that I have tmau. And, in the unlikely event that I do have it, I'm sure that it's mild & transient.

I know that my GP, CPN, Psychiatrist & other professionals whole-heartidly believe that I'm suffering from delusions; specifically 'olfactory reference syndrome (ORS) and maybe they're right. I just don't know...

I've never suffered with bad breath, smelly feet or offensive smelling urine. For example - yesterday (over the course of the day) I had eggs, chocolate & fish & chips, yet having been out & about today, not one person has made any comment. At all.

Surely if I had tmau; I'd be stinking the place out?

Sorry. I really didn't mean the above to sound flippant because, due to intense paranoia, I can, & do, completely sympathise with what you must all feel.

I do hope that I'll still be welcome on these forums, as I really need to learn how to live with my condition whether it IS actually tmau, or ORS.

Right now, due to my frame of mind, I have zero life. No work. No friends & no social life, etc.

You are all such a HUGE inspiration, & I still hope to make a friend, or two, 'if' you'll have me...

Kind regards

Lindsay
"When No One Else Cares; My Dogs' Still Love Me"
LJNLindsay
 
Posts: 70
Joined: Mon Aug 26, 2013 12:50 am
Location: Cornwall

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