Sod's Law

help with getting a diagnosis

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Re: Sod's Law

Postby SmellyKelly2 » Fri Oct 08, 2010 5:10 pm

Lisa
I worked for the NHS for 17 years, I found most people were good to me.
However, I went to work for a PCT and left within 6 months as they were so cruel.
Like you I thought that they should know better being in the health professional!
SK
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Re: Sod's Law

Postby kittycat » Fri Oct 08, 2010 7:18 pm

Forget it Lisa, you've got more important things to think about. Good luck with Mr Lachmann, take a good squirt of Bach's Rescue Remedy before you go in. Kx
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Re: Sod's Law

Postby SmellyKelly2 » Sat Oct 09, 2010 4:40 pm

Lisa
I told my hairdresser that I was having tests due to problems with my liver function.
You could start like that and say that you have found out that cannot process alot of protein foods.
Then, mention that this sometimes causes an odour, with the resulting build up of toxins.
Depends how much detail you want to give, I have found people have been very good about it (but I tend not to call it fish odour rather TMAU instead).
SK
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Re: Sod's Law

Postby atlast » Sun Oct 10, 2010 12:07 am

soon to be tested 9th november scared shitless ?
can it be any worse than the last 30 years? i just want a semi normal life. not had one yet im bright tallented and very much wasted my life by moving job by job cos of the obvious now bearing in mind im a chef and you would expext a bit of a "food" smell that has not changed a thing i had a good job in a large office managering catering but every morning by 10 o clock i was in tears in the loo . not bad for someone six foot four and bald.
you may think you are the man but when every bit of your self confidencence is striped you still need your mum.
who from the age of 8 let my older brother tell me i stink of fish. THIS is not a sob story but i truely believe until you have lived this total depravation of normal life you only TRY AND UNDERSTAND .
im very graetfull for anyone who has listerned to my rant .
hope ive not put people of talking to me
all the best
jay
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Re: Sod's Law

Postby SmellyKelly2 » Sun Oct 10, 2010 5:12 pm

Jay
I can totally relate to your story.
Hope the tests gives you some answers, so that you can move forward.
SK
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Re: Sod's Law

Postby mart77 » Thu Oct 14, 2010 10:53 pm

Hi Jay,

Mate I can totally understand. I am around your age I think (32) and have only just got diagnosed. When i look back at what my parents fed me it makes me laugh, but is also kind of frustrating, as they must have known there was a problem. Interstingly I got a lot of grief when I was a teenager, but later at uni it seemed to go away, and has only really got worse in the last 5 years. I eventually managed to get my doctor to write/ring up Sheffield hospital and organise a 24hr urine test, which came back positive (i ate loads of "bad food"!!) and then they requested a second test. Again this was positive and I then had a genetic blood test. I was diagnosed with a TMAU1 with a novel gene mutation. I have been prescribed antibiotics, but have not taken them yet as they are hard-core!!!! Told that if I even think about drinking I will be sick, they also totally destroy your gut, so am a bit wary. I think I suffer only if I am "loaded" with too much choline rich food, so have completetly modded my diet. Only downside is that i have lost a bit of weight. I don't really eat anything at work now, just have fruit for lunch and fruit juice. Boring but its better than the ham and Coleslaw granary rolls I was eating!!! I had no idea!

For anyone who is having trouble getting their doctor to understand their problem, just send them the journals available on the internet and make them contact Sheffield - they will really help. When I went to see a consultant I also went to see a dietician at Manchester Royal who was ok and said they were seeing a vast increase in cases in the last few months.
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Re: Sod's Law

Postby SmellyKelly2 » Fri Oct 15, 2010 2:10 pm

Hi Mart77
I am a likely primary too, out of interest what sort of test result readings did you get? if you don't mind me asking?
I am taking the antibiotics to see if it helps.
SK
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Re: Sod's Law

Postby mel304067 » Tue Nov 02, 2010 8:55 pm

Hiya Jay
Your so right! My big sis called me HONK!!! My parents friends and doc all said "smell? no I cant smell you!"
Frustrating and almost forces you to think it might be in your head ( even though people change queue from behind you or tut and sniff loudly lol).
I'm going to smile and look forward to managing this thing now, as specially when I told my husband and children about this new diagnosis today and they took it all so well with the odd joke too! Good luck! Mel :D
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