Still no luck with gp

help with getting a diagnosis

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Still no luck with gp

Postby LJNLindsay » Sat Aug 31, 2013 7:49 pm

Saw my GP, again, yesterday but, as I suspected, she still won't allow me to take the test. Her reason being that she can't justify the expense on the NHS.

Great, I'll just spend the next 10, 20, 30+ plus years tearing my hair out with this constant paranoia :-(

Linds
"When No One Else Cares; My Dogs' Still Love Me"
LJNLindsay
 
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Re: Still no luck with gp

Postby malory » Sun Sep 01, 2013 5:54 pm

WHAT?!! It is your RIGHT to have the test done!
Go to your GP and insist upon it. Perhaps your GP practice needs to be enlightened with a few e-mails?
The diagnosis has not really helped me at all to be honest, but I fully understand that you want some answers, and it is your right to have them.
Dr Nigel Manning's letter should be sufficient for any GP. If not, take other articles with you. Seeing another GP is another possibility if all else fails.
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Re: Still no luck with gp

Postby LJNLindsay » Sun Sep 01, 2013 9:27 pm

Hi Malory,

Personally, I knew that she'd never budge &, honestly, I don't think she EVER will :-(

Sadly, because of my history with mental health which, incidentally, started up before this odour issue, I know that she just believes that my paranoia is part of my body dysmorphic disorder. She may well be right, but I just wish she'd realise that I need to know one way or another.

I realise that with a diagnosis; it would change how I feel but, at least I'd know that it's not just a case of me going mad.

I dunno. I'm at a loss as to know how to deal with it. Without answers/proof - how can I ever get closure?

Kind regards

Linds
"When No One Else Cares; My Dogs' Still Love Me"
LJNLindsay
 
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Re: Still no luck with gp

Postby Tenacity » Sun Sep 01, 2013 11:22 pm

Hi Linds,

I read your post here and in the intro section.

Firstly, I am sorry to hear that you're going through a tough time with your mental health. That can't be fun.

From what I can gather, you think you have Olfactory Reference Syndrome, which, as you will know, is a common condition associated with BDD.

Do you mind if I ask you a personal question? Are you currently receiving any kind of counselling or psychotherapy for your body dysmorphic disorder? If so, have you asked your therapist whether s/he thinks getting the TMAU test done would help you get closure? If you have a therapist who can advocate for you, it can help the GP see things from a different point of view.

If you are not getting counselling, had you thought of asking your GP for a "talking therapy" to help you deal with ORS? That way you can get help and show willingness to listen to your GP's advice, which may either lead you to resolve the problem without needing the test, or make your GP more amenable to sending a sample to the lab if you try one thing and it doesn't work.

Finally, if that fails, and you are convinced that getting the test done is that important to you, I would suggest one of two routes:

1. You have the legal right to get a second opinion from another GP. To do this, simply ring another surgery in your area that is not associated with your main surgery. Explain that you don't want to register permanently, and are just looking to get a second opinion. I'm assuming you haven't done this before with other conditions, and I certainly wouldn't recommend doing it often as it can get you a reputation. Nevertheless, as a one off it should be totally fine.

Take some basic information about TMAU, and possibly Dr Lachmann's contact details in case they need more info about the test or decide to refer you. http://www.uclh.nhs.uk/OurServices/Cons ... hmann.aspx

2. Do the same thing, but get some savings together and go the private route. You can normally get a short private GP consultation for £50 - £100. They may also be able to refer you to the National Hospital as a private patient.

In both cases if you do get a sample done, you should probably do it with a choline load (eat lots of nuts, chocolate, eggs, fish broccoli etc) and around the time in your menstrual cycle where you think you get the musty smell.

Also (and you can tell me to keep my opinion to myself here if you like), I do think you need to ask yourself some tough questions.

-Firstly, what do you expect to get out of this? How will you feel if the test comes back negative (which you seem to be expecting). Will your paranoia really go away, or will you just start worrying you have another malodour condition?

-Do you think there are any emotional issues you are avoiding by focusing on TMAU so much?

Finally, had you thought of getting a trusted friend or relative to tell you honestly if you really do have a problem? Trust me, it's infinitely more reliable than a lab test, which will only tell you if you have one particular problem, after all.

Please understand, I am not trying to dissuade you by saying all of this. Lots of people with BDD get ORS, but that doesn't mean it's impossible to have BDD and TMAU! If you really feel you might have TMAU, I absolutely do think you should get the test done, no matter what anybody else says. However, if I thought I had ORS then personally I would be trying to get treatment for that first and foremost. If it turns out you have both, then at least you will be able to tell which comments are real and which are paranoia once the ORS is under control.

I hope that was vaguely helpful rather than upsetting. I am trying to be supportive, honestly! Feel free to talk to me on here again if I haven't put you off...

Tx
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Re: Still no luck with gp

Postby LJNLindsay » Mon Sep 02, 2013 8:23 am

Hi Tenacity,

And thank you for your helpful advice.

My mental health issues have been with me since I was 17 &, over the years, it shows no signs of improvement, sadly. Still, we ALL having *something* that we have to deal with, I guess!

As for 'therapy' yes, I've had lots of support over the years; CBT, Art Therapy, Group Therapy, Rethink support groups, Outlook SW, plus I have a psychiatrist & a CPN. Trouble is, when I keep mentioning my odour issues, specifically with my GP, CPN, psych, nurse's & those in the care of my mental health issues; they all look at me as if I'm mad (I am, I guess...)

After all the various group therapies I've taken part in, not to mention various courses over the years, no one has ever complained about me smelling bad.

My family can't smell anything either.

I will admit that 95% seems to be paranoia on my part. Trouble is, none of the mental health team seem to take me seriously (with how this belief affects me) and, as such, I'm not getting much in the way of help.

I'm sorry to those of you that do have a diagnosis of tmau. You must all think I'm a fraud but, trust me, I'm living the life of someone that does have tmau what with hygiene rituals, supplements, etc. I'm now considering the low-choline diet, too.

Anyway, I have an appointment with my CPN this afternoon so I'll tell her about my appointment with the GP, & see if there's anything she can suggest though she (CPN) doesn't know what to so with me anymore than my GP does :-(

As for the second opinion, yes, I had considered that though I'm reluctant to be seen to be making waves...

As you say, failing that, I could also try & save which will enable me to have the test done privately.

Either way I have to get this sorted. Somehow.

As for trusted friends, sadly, I don't have any these days. In my last job I though I had two really good, trustworthy friends yet when I confronted them both over things I'd heard, both of them denied it. One even told me to ask one of our 'senior' staff saying: "she'll tell you...". Of course, I never did. Now it's too late.

Thanks once again for your thoughts & advice. I Really appreciate your input :-)

Kind regards

Linds x

PS; I'm sorry if my reply is rather on the short side but, unfortunately, I don't have access to a PC so I have to type everything on my tiny phone keypad. No mean feat when you have 'fat finger syndrome' (as I do, LOL).
"When No One Else Cares; My Dogs' Still Love Me"
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Posts: 70
Joined: Mon Aug 26, 2013 12:50 am
Location: Cornwall

Re: Still no luck with gp

Postby atlantis » Mon Sep 02, 2013 7:39 pm

Hi really feel u should get tested even if you have to pay . My family can't smell me I have intermittent symptoms my other half who I have been with 8 years has never noticed it , I have friends who don't notice it . It happens under stress (which im not under when with them) gps thought I had ofs as well - was tested twice first was neg second was v positive ! Took me 14 years to get a diagnosis wit gps trying to palm me off with anti depressants. You sound like ur situation is quite possibly the same as what I went tru . Good luck x
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Re: Still no luck with gp

Postby LJNLindsay » Mon Sep 02, 2013 11:31 pm

Hi Atlantis,

Thanks for your response.

Honestly, I think I am going to have to save up, & eventually pay to have the test done privately. Though, as things stand just now, that won't happen anytime soon. Certainly not this year :-(

I dunno. I'm just in denial, I think...

For the most part I don't think that I have tmau but, every time I (think) I hear a comment, or get a certain reaction from people; to me it just acts as confirmation.

I so, so, wan't to find out but, on the other hand, I'm dreading being told that I have it :-(

Like you, I believe that my symptoms are transient, & mild. And, as such, do you mind me asking what, if any, precautions you are taking i.e diet, and/or supplements, etc. If so, have you noticed any improvement?

As for the test itself, I'm confused as to what it is. I mean is it simply the urine test, or do you have to have a blood test, too? I assume I'd still have to go thru my GP to get the ball moving (even though I'd be paying...?)

Cheers!

Linds x

PS: after a hard-boiled egg, & coffee, for brekkie this am, I then had a 1/2 hour trip on a bus packed with people. No one said anything, nor did I notice any adverse reactions. Surely I'd have been stinking the place out?

God. This is why I just don't know what to believe anymore :-(
"When No One Else Cares; My Dogs' Still Love Me"
LJNLindsay
 
Posts: 70
Joined: Mon Aug 26, 2013 12:50 am
Location: Cornwall

Re: Still no luck with gp

Postby atlantis » Tue Sep 03, 2013 7:55 am

Hi linds, im pretty sure if u want a private test done u don't need to involve ur gp its not the route I had to use but someone here will know how its done? ?? I had urine tests have asked for a blood one as the second one indicated it might b primary but they feel its unnecessary
As far as diet an supplements I take pro biotic s capsules from Holland an barret a multi vitamin an b2 tablet
My diet isnt as strict as some all I have done is cut out red meat anything containing soya lecithin beans eggs fish onions and garlic, coffee an chocolate are my weakness, all I know is I do eat a lot less choline then I used to. I can eat "bad " food an not have a reaction that day, for me I believe it builds up in my system an release s at the most inappropriate times . Another weird thing is it never happens when im sitting go figure ! I can go to the cinema an as long as I get a seat can travel by train in rush hour, but bein stuck in a shopping queue or walkin about in the library , children's parties will cause it to flare up .def a psychological element to it so I try to keep my stress levels low an get plenty of sleep .hope that helps.x
atlantis
 
Posts: 37
Joined: Tue May 15, 2012 8:40 pm
Location: epsom

Re: Still no luck with gp

Postby atlantis » Tue Sep 03, 2013 7:56 am

Hi linds, im pretty sure if u want a private test done u don't need to involve ur gp its not the route I had to use but someone here will know how its done? ?? I had urine tests have asked for a blood one as the second one indicated it might b primary but they feel its unnecessary
As far as diet an supplements I take pro biotic s capsules from Holland an barret a multi vitamin an b2 tablet
My diet isnt as strict as some all I have done is cut out red meat anything containing soya lecithin beans eggs fish onions and garlic, coffee an chocolate are my weakness, all I know is I do eat a lot less choline then I used to. I can eat "bad " food an not have a reaction that day, for me I believe it builds up in my system an release s at the most inappropriate times . Another weird thing is it never happens when im sitting go figure ! I can go to the cinema an as long as I get a seat can travel by train in rush hour, but bein stuck in a shopping queue or walkin about in the library , children's parties will cause it to flare up .def a psychological element to it so I try to keep my stress levels low an get plenty of sleep .hope that helps.x
atlantis
 
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Location: epsom

Re: Still no luck with gp

Postby LJNLindsay » Tue Sep 03, 2013 2:33 pm

Thanks Atlantis,

I'm still really not sure what to do...

I have (at least) one boiled egg a day, yet never notice anything nasty.

That said, my parents & I were sat in a car dealership the other day &, all of a sudden, we were all engulfed in this really horrible, sulfuric smell. My folks even mentioned it, & they're very insensitive to smell in general. Anyway, the smell disappeared almost as soon as it arrived, sigh. It's just the *not* knowing, & living with this constant paranoia :-(

It wouldn't be quite-so bad if I had a sympathetic Doctor.

Thanks for telling me what you do in the way of treatment. I currently take 2 activated charcoal a day (after I've eaten my egg) plus, last think at night, I take 100mg of copper chlorophyll. Aside from that, I really am tempted to try the low choline diet, but how can you when you don't even know if you have tmau.

Argh.

Either way, I'm so glad that I found this forum. You are all so encouraging & helpful

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

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