getting nowhere

help with getting a diagnosis

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Re: getting nowhere

Postby Rosie » Mon Oct 08, 2012 9:51 pm

Hi Minnie,

It really does seem outrageous that you've been mucked about like this when GPs should arrange for you to have the test on the NHS. You could always change your doctor and start again. That may sound extreme, but you have a right to choose a doctor and some are more capable than others. I recently got a diagnosis, but this was because I gave my doctor information about TMAU and told him that I wanted to be referred to Dr. Lachmann as soon as possible. Thankfully, he wrote the necessary letter.

Doctors don't have to live with this, but we do. Don't give up.
Rosie
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Re: getting nowhere

Postby minnie » Sat Oct 27, 2012 9:59 pm

I know its terrible that we all have to struggle to get help with this :(

I may have some good new though! I got a letter through and a testing kit from clinical chemistry today. They want me to do the test and send it to my local hospital to send to Sheffield. Once they have the results they will take it further.I am really pleased that I've finally got to the right person now. Just hope this test leads to some good management advice of this condition because I really want my life back.

Minnie x
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Re: getting nowhere

Postby Rosie » Sun Oct 28, 2012 10:59 pm

Oh that's good news. Good luck. I've recently had a positive diagnosis (after many years of wondering what on earth was wrong!) and can at last address management and, not least, all the psychological issues that have built up. Send me a PM if you need to discuss anything in particular.
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Re: getting nowhere

Postby minnie » Thu Nov 29, 2012 2:13 pm

Just to keep people update,

I got my test results back and I've tested positive :( Don't know how I feel to be honest, whether its a good thing that I finally have a diagnosis or if it wasn't a bad thing if I tested negative so I could eliminate other conditions that may of had potential cures.

Not looking forward to the next steps of finding a dietician that knows about this which is probably going to be another game of swings and roundabouts. Working with my GP will be fun as they still can't guide me on this.

Fed up with this whole thing now :(
minnie
 
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Re: getting nowhere

Postby Maisie » Fri Nov 30, 2012 5:44 pm

Hi Minnie

Ask your doctor for a referral to Dr Lachmann in London. Once you've been to see him, you can e-mail the dieticians there with any queries you may have. They're very good and reply very quickly.

Maisie x
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Re: getting nowhere

Postby minnie » Mon Dec 03, 2012 10:44 pm

Hi Maisie,

The specialist that arranged my test has contacted me and explained alsort over the phone. He is going to send my doctor some information about tmau and ask him to prescribe me some anti-biotics. The specialist said I can have an appointment to come and see him but the only thing is my doctor has got to make the referral. So guess I won't get seen till after Christmas now.

The specialist I am going to see works alongside Dr Lachmann I believe so I guess they will have more or less the same info. Plus, going down to London might be a bit far so glad I've found someone that's only a few hours away.

Thank you for your help though and if I find I'm getting nowhere again I will try getting in touch with Dr Lachmann

x
minnie
 
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Re: getting nowhere

Postby Rosie » Thu Dec 13, 2012 8:49 pm

Hi Minnie,

I'm glad you managed to get a diagnosis, and I do sympathise, it's easy to feel fed up, but perhaps better to have a name for this thing than not know what's wrong at all? I had a diagnosis a couple of months ago and felt the same sort of confusion, but to my mind the worst has to be over (cringe to think of the awful situations I've been in when the 'symptoms' have flared up but I've had no idea what was going on and simply felt freakish). It's probably going to take a while to accept that this condition isn't going to magically go away, and I'm still getting used to this idea too, but we don't have to be defined by it, we just have to live with it and enjoy life the best way we can. I don't know if you've managed to have any CBT or similar therapy, but I've found talking to someone has been really helpful, maybe worth talking to your doctor about it?

Take care
Rosie
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Re: getting nowhere

Postby minnie » Mon Dec 17, 2012 10:26 pm

Hi Rosie,

No CBT hasn't been mentioned yet but am willing to give anything a go. Got an appointment with my doc after xmas so hopefully will get the referral to the specialist soon and I will mention it. Only people that I have been able to talk to about this is people on here who have been so helpful and understanding. I have confided in my mum and partner but they haven't really believed that I had this awful thing until the results came through.

I am starting to accept it more now but dread each day and am always thinking about it. I think once I start some anti-biotics I will start to be more confident as the specialist told me hes found this is most successful for his patients. I know I can't let this control my life so am trying to go out more now and face facts that I have this.

Thanks for the support and hope you are able to manage your symptoms too.

Take care

minnie x
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