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

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

Postby silent_suffering » Wed Jun 13, 2012 12:01 pm

Hi everyone,

I have visited this site on many occassions but have never had the courage to join & post...until now. Im going through a really hard time at the moment and need to speak to people who will understand what im saying and wont judge me for things i have no control over.

So i have had a problem with odor for since my early teenage years, perhaps even earlier but i properly started noticing it around the age when i was at secondary school. I am now 26 and have been suffering with this for well over a decade! It seems like now is the final straw i have had enough of how i have to live my life...somehow i have held down a longterm relationship and have two beautiful children, but i have no friends, hardly any family and to make matters worse i think my daughter has the same as me and she is only 5 :( I really really need to get this off my chest and feel like i have atleast 'spoken' to someone about this.

Over the past year i feel like my odor has got alot worse, constant comments from family that they can smell poo,asking who has passed wind/smells? It isnever directed at me although i am 99% sure they know its me. I wrote a letter to my doctor years ago, describing my problems as i was far to embarrassed to see him in person, i saw him shortly after but he said he couldnt smell anything & refered me to my local hospital where i had a camera inserted into my bowel and eventually was told i had IBS. I have had problems holding down jobs as it was just too humiliating knowing people were making comments behing your back, thinking you were dirty and disgusting- who can blame them right? I havn't worked for over 5years as i am a stay at home mum whilst my partner works (thank god). I am virtually a recluse i spend most of my time indoors and only really go out at weekends with my family. I have a son who is under a year old and i am starting to relive the guilty feeling i had with my first child not taking him to baby groups/swimming with other children because i feel so vulnerable around other people. I get nervous at the end of every week when i know i have to go to a supermarket, i am a nervous wreck around people because of this, paranoid that i smell 24/7.

That is one of my problems. I used to think i only smelt sometimes, Then days when i thought i didn't smell someone would make a comment/pull a face and i would instantly feel this dark cloud above me. Now i think i smell constanly but wonder if im paranoid. I have taken an overdose in the past prior to having children because i have felt so worthless. I am starting to feel really depressed and imagine what my childrens lives would be like if i wasn't here anymore.....then i pick myslef up and force myself to get on with my day again :( I hate feeling like this. I have turnt down many opportunitys because of this and have to make excuse after excuse of why i cant go somewhere with mine or my other halfs family. I NEED MY LIFE BACK!

The reason for me finally opening up/trying to find help is my daughter. Ever since 2-3 years old she has suffered with really bad smelly wind, i also noticed at times her breath would have a fishy odor as well. Since starting nursery/school her odor has become very noticeable. Particularly if she has eaten certain foods such as tuna/baked beans etc. Straight away i recognised she probably has what i do. I discovered TMAU years ago after watching a programme call Help i smell of fish. I put our odor problems down to this. I bit the bullet a couple of months ago and took her to a doctor, i described that she has a bad odor which seems to just come from her pores rather then her physically passing wind, i explained i thought it was TMAU (he didn't seem to know much about this) I asked for him to refer us for a test. We eventually saw a doctor at our local hospital but i dont think she knew that much about it either. My daughter left a urine sample, which would have been tested there, and i was told to ring in 4-6 weeks for result. Problem is it wasnt done as strict as it tells you to do so on this site. Also my daughter hadnt had a high choline intake previously, and as she has intermittent smells (which typically she didnt have in the docs room) i feel like its going to be a false negative. I rang a month or so after and asked for the results to which the secretary told me she would chase them up and call me back....she still hasn't. Im guessing they found nothing or i would have atleast had a letter. I just know if it had been sent off to the doctor in sheffield things would be different. I feel like i am now hiding behind my daughter trying to get her a diagnosis so that i can finally get myself diagnosed as well, but i think because of the test not being done properly in the first place i will end up giving up and fearing the next years ahead of my daughter being bullied at school and no one around to help us. Her follow up appointment is not until novemeber!! I am so scared, for her....for me.....even for my son as he too may have problems in the future, i feel like its all my fault even though none of it is my fault. I have just seen that i can pay privately and i am wondering if i should. I think i suffer worse so perhaps paying for my test could help my daughters diagnosis if i am positive which i am 99.9% sure i am. Please help/advise me on what to do as i cant suffer in silence anymore. Thank you all so much for reading this post. (sorry its so long!)
silent_suffering
 
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Location: Hertfordshire

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

Postby bigvern » Wed Jun 13, 2012 12:47 pm

Hiya- In your position I would ask for a referal to Dr Lachmann in London - at least you know the test will get done properly and will be confident in the result - whatever it may be.
You can get a test done privately but you will need advice interprating results/management etc. - so why not get refered on NHS to Dr L and if it is TMAU you are in the best hands.
I have diagnosed TMAU and we had our daughter tested via the NHS genetics counselling service to see if I had passed on the faulty gene, so at least we know what we are dealing with

good luck!;

http://tmau.org.uk/index.php/getting-tested
bigvern
 
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Re: Ok.....here it goes....

Postby atlantis » Wed Jun 13, 2012 10:47 pm

Hi have met an spoken to lovely people from this forum an the support really does help, u r not alone with this any more have sent u a private message in case u ever need to chat . Take care melanie x
atlantis
 
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Re: Ok.....here it goes....

Postby silent_suffering » Thu Jun 14, 2012 3:37 pm

Thank you both for your replies. Melanie i have replied to your PM not sure if i sent it right though? As i said in the message i know i need to get a referal its just finding the courage to make that appointment and talk about it with my doctor, i just feel ashamed & embarrassed everytime i think about it. Its so frustrating because i know the only way i am going to get answers is to talk about it, but i just cant physically do it. Even just thinking about having to sit in the waiting room with people around me fills me with dread, i just feel like whats the point in my life, was i just put here to suffer :cry:
silent_suffering
 
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Location: Hertfordshire

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

Postby Weak » Tue Jun 26, 2012 7:34 pm

PLEASE STOP FEEDING HER FOOD HIGH IN CHOLINE, if what you think is true then if she eat foods too high in choline she might get worst. Raise her with the proper diet, the fact that eating the wrong foods produce the smell means that she may not always smell and only smell when she eats foods high in choline. Which means that her body can metabolize FMO3 to an extent. Now if she goes on a binge and eats alot of foods high in choline it her body may completely stop metabolizing it and she will have TMAU for the rest of her life. It HAS happened before.

Best thing to do would be to raise her on the diet (and the other girls) Not the strict diet but just one that doesnt allow for food extremely high in choline like salt water(or is it fresh water?) fish, beans, dark greens, etc.. When she gets 14/15 tell her about the disease and let her know why she cant eat some foods.
Weak
 
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Re: Ok.....here it goes....

Postby silent_suffering » Mon Jul 16, 2012 11:47 am

Thanks for the reply weak. I have tried to stop her eating the foods i know make her worse i.e baked beans,tuna etc. The problem is she loves these foods and was still choosing them at school for lunch. I always know when she has had baked beans at school because she smells really bad when i pick her up. I have explained she cant have them at school anymore as they make her 'pop' alot and its not nice for her teachers/friends. Obviously she is unaware that she is smelling without passing wind when eating certain foods.

I am not 100% sure of the diet we should be following from a medical point of view, obviously she is only 6 so although i know dairy should be cut i would be reluctant as she needs alot of calcuium at this age. I have cut it down for her i.e no milkshakes etc but she still has cereals with milk most mornings, cheese and yogurts occasionally.

I have recently had her results back, they came back 'fine'. As i previously mentioned i was not happy with the way she was tested, i was not told to give her a high choline diet, and the day she was tested was not a 'bad day' for her. Also the urine sample was not taken in the way described on this website. I was afraid of a false negative and i feel this is what we have had. I am reluctant to discuss this further with our GP as i just feel he doesnt understand this condition enough. My daughter is not 'fine' if she is still smelling bad for no good reason, my daughter is not 'fine' if people wont play with her at school because she smells horrible. I am considering paying privately and being tested by the company that are mentioned on this website, as its summer holidays coming up its the best time for me to do it as i can have a high choline intake without worrying about having to go out for a few days, im thinking atleast if i get the postive result then i can go to my GP armed with all the facts and take it from there, and then obviously get my daughter tested again but i would request the doctor mentioned above rather then our local hospital. Whats peoples opinions going down this route? The way i see it is my daughter breaks up this week and will have a fresh new strart in september so i really want to get the ball rolling now and maybe ateast have some results before she goes back to school.
silent_suffering
 
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Joined: Wed Jun 13, 2012 11:09 am
Location: Hertfordshire

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

Postby amber » Mon Jul 16, 2012 12:05 pm

it was really difficult reading your posts. i know how inpossible it is to live like this and not to have the answers. i cannot talk about this either i just cry!! i think it was adrian mcc off aruns forum sent me a copy of a letter explainign how to do the test properly and i just took that to my doctor and thrust it in her hand. my first test was not done properly either but i was lucky that a GP who was only at my surgery for a short time had heard of the syndrome at least although she knew nothing of the tests or how much this destroys everyones lives. i am struggling with what to do next or if there is anything i can do because the odours that can be omitted are just off the chart. but at least you have a partner which is something many of us miss out on. think about joining that emailing plan and hope that they may reverse their decision and inable research so that your family can receive the help it deserves
amber
 
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Re: Ok.....here it goes....

Postby silent_suffering » Mon Jul 16, 2012 12:22 pm

Thanks Amber for the reply, just having a reply from people that actually understand what im going through has me in tears. knowing that people out there are also living with this and im not the only one living in this hell makes me sad. Its just not fair. I hate myself for having a second child, what kind of life is he going to have. But at the same time when my partner and daughter are at school/work he is my ray of sunshine the only thing that keeps me going at the moment. I have distanced myself from family, i no longer have friends. I feel like a prisoner in my own home most of the time. My life shouldn't have been like this!!
silent_suffering
 
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Location: Hertfordshire

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

Postby Lisa » Tue Jul 17, 2012 9:26 am

Whoa, hang on a moment!
Right, if this was me, heres what I would do.
I would go back to your GP, I know it's embarrasing, but do it. Print off all the info you can, including the correct procedure for testing, take your daughter with you, explain that you think you and your daughter have this condition, and you would like to be tested, both of you. Tell the GP about this website, and tell him to have a look. Do not be fobbed off!
When it comes down to the test both you and your daughter do a choline load, that way you should get back a clear result.
IMO, I would not put your daughter on this diet without the full consent of a dietician, (sp), and guidance from a GP, she's 6? She needs all the goodness and nutrients she can get so she grows up strong and healthy, we all know what damage this diet can do if you are are on it for a long time, and thats us as adults, you dont know what harm it might do to a child if not regulated.
I really dont want to scare you, but please make sure your daughter, and you, are monitored carefully.
I wish you all the best, and I hope you get some answers.
It took me awhile to see my GP, I know where you are coming from, but putting this off will only prolong your sadness, perhaps think that today, will be your new start, things will get better, I promise you that, maybe not straight away, but it will.
Let us know how you get on, we're all here behind you, you are not on your own thats for sure.
Good luck. x
:)
Lisa
 
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Re: Ok.....here it goes....

Postby Lisa » Tue Jul 17, 2012 9:33 am

Weak, please think carefully before you type.
Telling someone not to feed their child certains foods is not down to you.
It is obvious that this lady is finding her feet with this condition, and to jump in to tell her to stop, is wrong. Dont frighten the wotsit out of her, in some cases people need to go at their own pace, dont be so quick to comment, every case is different.
Neither you or I are qualified to dish out certain advice, we can give our opinion if asked, but please dont leap in head first.
Consider others feelings. :roll:
Lisa
 
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