getting nowhere

help with getting a diagnosis

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getting nowhere

Postby minnie » Tue Sep 25, 2012 11:09 pm

Hi everyone,

After months of trying to convince my doctor of this condition, I managed to get the testing equipment sent from the children's hospital in Sheffield. I did the test with the choline load before hand. I waited weeks on end for some results only to find out that they weren't going to fund the test and its not something they would normally test for. Apparently I didn't need a diagnosis and there is freely available guidance on the condition.

I then begged my doctor to refer me to an endocrinologist as I have read people have had some sucess or at least some guidance or testing. After waiting 6 weeks to get this appoitment, I traveled all the way to Sheffield to thier endocrinology unit. After explaining my symptoms and having an examination, the specialist admitted he had never heard of the condition and that I knew more about it than him. He went to discuss this with another consultant who still didn't know anything about tmau. I told them about Nigel manning and that my doctor had spoke to him once before when she got the testing equipment. He then returned and said he would have to write a letter to someone to get me referred to the right department.

Does any body know how to get in touch with Dr manning or who to see to get a referral? I'm really going in circles with this and passed from one person to another. I' m going insane with this condition and really need some advice on how to control it. It's getting to the point where I don't want to go out and my family are suffering cos I'm missing work.

Thank you for listening to me rant. Hope someone has some advice. X
minnie
 
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Re: getting nowhere

Postby bigvern » Wed Sep 26, 2012 10:28 am

Hi Minnie, :D

Sorry you've had such a hard time, my advice would be to get your gp to refer to

Dr Robin Lachmann PhD MRCP
Consultant in Metabolic Medicine
Charles Dent Metabolic Unit
Box 92
National Hospital for Neurology and Neurosurgery
Queen Square
London

and get your Dr to read :
http://tmau.org.uk/index.php/joomlaorg/ ... r-lachmann

Dr L is the leading UK clinical TMAU expert and see patients on the NHS (where as Mr Manning is a 'scientist'), once you get an appointment you could ring his secretary and explain the prev. problems you have had and they may advise you how to prepare for your visit to ensure a succesful test..

http://tmau.org.uk/index.php/getting-tested
bigvern
 
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Re: getting nowhere

Postby minnie » Wed Sep 26, 2012 9:27 pm

Hi Bigvern,

Thank you for you reply. I will get onto my doctor with this address tomorrow. I've actually moved areas recently so am going to have to start all over again with a new doctor and try convince them that this is real. Hopefully my previous doctor can send over all my information and we can just get straight to the referrals bit. I can't believe how hard it is just to speak to someone that knows about this and how to deal with it :roll:

Have you been to see Dr Lachmann? London is a long way off for me but if I could get a referral I would be more than happy to go. I have a feeling that my gp will just turn round and say that they want to refer me somewhere closer to home. Although, I honestly don't think there is going to be anyone closer.

Thank you for your help and I am definitely going to keep pushing for an appointment! This condition is driving me mad and stopping me from doing so much :(
minnie
 
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Re: getting nowhere

Postby egglover » Thu Sep 27, 2012 10:23 am

Hi minnie,

Sadly your story sounds just like mine - except I didn't travel all the way to Sheffield only to be told it was a waste of time - That's terrible :x

I had to break down in tears infront of my doctor and tell them my life is becoming unbearable before they would agree to test me. You really need to stress how it's affecting your life before they will take notice. Don't hold back and maybe make a double appointment if possible so they don't try to hurry you out the door.

My GP wouldn't refer me to London but is trying to find a dietician who has knowledge of TMAU which will do for now.

Good luck and let me know how you get on :)

ps make sure they send the sample to the laboratory in Sheffield. At first my doctor just sent mine to the local hospital and naturally they didn't have a clue what to do with it !
egglover
 
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Re: getting nowhere

Postby PoetFire » Thu Sep 27, 2012 4:52 pm

There are also 'metabolic consultants' based in big hospitals around the country now. You may be able to ask to be referred to them (usually based in 'adult metabolic units'). I think there are ones in Manchester, Cardiff... probably more. Whether they are any good is another issue, but they hopefully will sanction the test easier and then give an 'official' diagnosis

Or your GP could order the test. Probably a lot of them don't want to now because of money. Even the local biochemistry lab will not have heard of the test (they usually have to order tests within the local authority). Ideally you want it sent to Nigel though. If you want to convince a GP, you could show them the letter by Nigel on this website :
http://tmau.org.uk/index.php/getting-tested

There is also this document by Nigel, which you could print for your GP and even show the phone number
http://www.meboresearch.org/Nigel%20Man ... e%20UK.pdf

Re your GP, if they won't sanction the test you could offer to pay for it (currently £134)

It is ironic that we have a free health system but have to jump through hoops to get access to a test even if we will pay.
PoetFire
 
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Re: getting nowhere

Postby minnie » Thu Sep 27, 2012 9:00 pm

thank you poetfire, I really apreciate any help and advice anyone has to offer :)

I haven't come across metabolic consultants as yet and Manchester would defiantly be closer for me :D I will mention this to my GP and see what they make of it. I did actually get all the testing bottles from the teaching hospital in July but was refused the test as my doctor didn't want me to pay for it as she was sure that it was going to be free. She had spoke to Nigel Manning and he apparently seemed quite positive about the whole process and told her that testing wouldn't of been a problem. I got a letter from the NHS weeks after I handed in the sample telling me that if I have tmau that I don't need a diagnosis for it? according to them there is freely available guidance in controlling the condition? For one, there isn't freely available guidance as no doctor I've come across knows about it or knows where to send me and two, how can you start treating someone for something you're unsure they have? I would of preferred them just to be honest and say no we are no paying for the test because we don't have a clue what it is you have and we don't actually believe there is such a condition. Yeah I guess there's paying for it but it just seems alot of money. Especially if my results come back that I don't have it then it would seem such a waste of money and I would still be left in limbo not knowing why I smell every now and again :( Not that I want to have it but at least I would have an explanation.

Hi eggloever,

it seems that you, me and so many others are in the same boat! I do need to be more honest with how I'm feeling cos every time I go to the docs I just accept what that are saying. I didn't want to seem to depressed about it though because a doctor been a doctor will probably try treating me for depression and totally avoid the main issue. I have even had one doctor tell me (when I first started trying to find out what I might have) that they can't smell anything which suggested that they thought it was all in my head :evil: Once I've been to another appointment I will keep you posted :D

thanks for your helps guys :)
minnie
 
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Re: getting nowhere

Postby bubbles » Fri Sep 28, 2012 10:47 am

Minnie,
So sorry to hear of your nightmare experience, sadly it is not uncommon, I went to my Doctor and I had to pay for the test because he said the NHS wouldn't fund it because it is so rare and the board that would allocate funding in all likelihood would never have heard of it and that process could take months, I was also told that if I wanted to go to see Dr Lachmann I would have to pay for that as well because any referral would have to be to my local metabolic clinic whom he admitted might know nothing about the condition. When the results came back positive he was slightly surprised but with the passing of time I think he thinks that I have just found a label for my odour issues, it doesnt help when your family, etc cant smell it and whe you present yourself to the doctor there is no smell. Because I have a history of OCD with this (is it any wonder!!!!) his last remark was "Do many people with tmau have ocd?" and I kinda felt he was suggesting it was a bit all in my head, maybe I am picking him up wrong or being unfair to him but I have been put off the medical route altogether and if I get my DNA I will have to scrimp up and save because there is no way I am going back there, it will have to be done privately, it is bad enough having to live with this condition but having people doubt the effect it has on your confidence, esteem and in every area of your life can sometimes be equally as soul destroying however I am soldiering on, trial and error with the diet, supplements etc and things have got better.
bubbles
 
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Re: getting nowhere

Postby Ellie Girl » Fri Sep 28, 2012 11:04 am

That's outrageous that Drs are refusing to refer/fund - if your Dr won't allow for you to have the test ask for a referral to an endocrinologist or metabolic spcialist close to your area - that was the route I had to go down - an endo/matabolic specialist will almost certainly either a) refer you to Dr Lachman; or b) send off for the tests. The NHS does fund these tests. The ignorance of GPs is astounding.


Good luck and let us know how you get on!

E x
Ellie Girl
 
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Re: getting nowhere

Postby minnie » Mon Oct 08, 2012 2:31 pm

Thank you for your reply's and I have some news that I'm quite excited about! I may have a break through but...I don't want to get my hopes up to much.

I have just contacted the endocrinology department where I last had my appointment and spoke to the receptionist there. She said that the specialist that I saw has wrote a letter to the department that may be able to help. I am hopefully being referred to a chemical pathologist consultant in the clinical chemistry department at Northern general in Sheffield. I just tried to ring that department to see if they have received the letter and to see if they can give me a date for an appointment but there was no answer :( I guess I'm just being impatient now but I'm sure we have all been in this position and the slightest chance there may be help we're all over it! :D Has anyone been to see a chemical pathologist consultant? I really hope they can help. My partner has a medical background and he seems to think that they will defiantly know about tmau.

If this turns out to be another pointless meeting then I am going to take the private route Bubbles because its just wasting time. I don't want to have to pay a ridiculous amount of money just to get a diagnosis but if I have something on paper then maybe I will be able to see a dietitian who can advise me more on the diet because I think that's where I am slipping up.

To right Ellie! it is and I know alot of people have had the test funded so don't understand why it would be any different for people like me and bubbles? :?

Fingers crossed that I get somewhere with this ;)
minnie
 
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Re: getting nowhere

Postby PoetFire » Mon Oct 08, 2012 4:51 pm

Hi Minnie. Although in theory they should know about it, I'm guessing there's a good chance they won't have :(

I would ask them before, and if not then try and get some TMAU info to them before you visit. If not, you could take some tmau info with you. Even if you can get them to phone Nigel Manning, I think that would help a lot.
PoetFire
 
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