Mito doctors in South Australia?

[Guest guest]

Greetings!

My name is Freya, I live in Adelaide, Australia, and I've been lurking

here for a month or so.

About 4 or 5 years ago, I got referred to an endocrinologist who did a

lovely battery of blood tests to try and figure out what was wrong

with me. The only 'positive' result was blood lactate - 5.45 mmol/L -

so he diagnosed 'mitochondrial disorder', which seemed to explain away

most of my symptoms (exhaustion, fatigue, exercise intolerance,

hypoglycaemia, and very occasionally a seizure or stroke-like episode).

Now, I'd like to get a more specific diagnosis, and more advice than

" screw with your diet, take vitamins, and keep up with the research "

(which appears to be working to some extent, btw), but I'd like to

know who to tell my GP to refer me to to get it. I know there are

specialists in Melbourne and Sydney - are there any mito doctors in

Adelaide (that anyone here knows of and would suggest)? If I have to,

I'll take time off work and go interstate, but I'd rather not.

Thanks,

Freya.

[Guest guest]

I am in Sydney Freya, don't know who is in Adelaide though. The mito expert for

NSW is Prof Caroline Sue (a neurogenetecist) at Royal North Shore Hospital. She

has told me that most of her referrals are from regular neurologists. So if you

yourself don't find any experts in SA, my suggestion would be to get a referral

to a neurologist there and ask him to find out for you who is the closest mito

expert to you. Pamela ps with lactate my understanding is that it is the

lactate/pyruvate ratio that is significant.

Mito doctors in South Australia?

Greetings!

My name is Freya, I live in Adelaide, Australia, and I've been lurking

here for a month or so.

About 4 or 5 years ago, I got referred to an endocrinologist who did a

lovely battery of blood tests to try and figure out what was wrong

with me. The only 'positive' result was blood lactate - 5.45 mmol/L -

so he diagnosed 'mitochondrial disorder', which seemed to explain away

most of my symptoms (exhaustion, fatigue, exercise intolerance,

hypoglycaemia, and very occasionally a seizure or stroke-like episode).

Now, I'd like to get a more specific diagnosis, and more advice than

" screw with your diet, take vitamins, and keep up with the research "

(which appears to be working to some extent, btw), but I'd like to

know who to tell my GP to refer me to to get it. I know there are

specialists in Melbourne and Sydney - are there any mito doctors in

Adelaide (that anyone here knows of and would suggest)? If I have to,

I'll take time off work and go interstate, but I'd rather not.

Thanks,

Freya.

[Guest guest]

I'd need to ask my GP whether the endocrinologist tested pyruvate

levels as well

as blood lactate - I don't think he did, as I remember he only added the blood

lactate as an afterthought. This is one of the reasons I'd like to see someone

who specialises in this kind of thing, and get properly diagnosed.

Network via a neurologist? Cool. Alternative courses of action for when the

first choice is unavailable are always useful

Freya.

Quoting pamelama33 pamelama33@...>:

> I am in Sydney Freya, don't know who is in Adelaide though. The mito

> expert for NSW is Prof Caroline Sue (a neurogenetecist) at Royal

> North Shore Hospital. She has told me that most of her referrals are

> from regular neurologists. So if you yourself don't find any experts

> in SA, my suggestion would be to get a referral to a neurologist

> there and ask him to find out for you who is the closest mito expert

> to you. Pamela ps with lactate my understanding is that it is the

> lactate/pyruvate ratio that is significant.

> Mito doctors in South Australia?

>

>

> Greetings!

>

> My name is Freya, I live in Adelaide, Australia, and I've been lurking

> here for a month or so.

>

> About 4 or 5 years ago, I got referred to an endocrinologist who did a

> lovely battery of blood tests to try and figure out what was wrong

> with me. The only 'positive' result was blood lactate - 5.45 mmol/L -

> so he diagnosed 'mitochondrial disorder', which seemed to explain away

> most of my symptoms (exhaustion, fatigue, exercise intolerance,

> hypoglycaemia, and very occasionally a seizure or stroke-like episode).

>

> Now, I'd like to get a more specific diagnosis, and more advice than

> " screw with your diet, take vitamins, and keep up with the research "

> (which appears to be working to some extent, btw), but I'd like to

> know who to tell my GP to refer me to to get it. I know there are

> specialists in Melbourne and Sydney - are there any mito doctors in

> Adelaide (that anyone here knows of and would suggest)? If I have to,

> I'll take time off work and go interstate, but I'd rather not.

>

> Thanks,

>

> Freya.

>

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[Guest guest]

Hi Freya,

My name is Wanda and I am in Lakes Entrance in . I was diagnosed 7

years ago in Adelaide and saw a neurologist called Dr. Waddy. I saw

her at the RAH and privately in North Adelaide. My first Dr was a

reumatologist her name was Suzannah Proudman in South Terrace and RAH. I had

2 muscle biopsies done and some muscle was sent to Melbourne to Prof Ed

Byrne (now retired) for further testing and analysis. I now see a wonderful

neurologist in Melbourne who was trained by Prof Byrne and her name is Dr.

Katrina Reardon at St 's Hospital. Since seeing her in the last 2

years I have had another muscle biopsy for new DNA genetic testing that is

extremely upto date in Australia at St.s. The results are all back

and I now have peace of mind about my diagnosis. I hope I have helped,

maybe if you called the RAH and asked for the neurology dept they could

help. Contact me anytime.

Regards

Wanda

www.jordyalanbordercollies.com

>

>Reply-To:

>To:

>Subject: Mito doctors in South Australia?

>Date: Tue, 18 Apr 2006 02:47:01 -0000

>

>Greetings!

>

>My name is Freya, I live in Adelaide, Australia, and I've been lurking

>here for a month or so.

>

>About 4 or 5 years ago, I got referred to an endocrinologist who did a

>lovely battery of blood tests to try and figure out what was wrong

>with me. The only 'positive' result was blood lactate - 5.45 mmol/L -

>so he diagnosed 'mitochondrial disorder', which seemed to explain away

>most of my symptoms (exhaustion, fatigue, exercise intolerance,

>hypoglycaemia, and very occasionally a seizure or stroke-like episode).

>

>Now, I'd like to get a more specific diagnosis, and more advice than

> " screw with your diet, take vitamins, and keep up with the research "

>(which appears to be working to some extent, btw), but I'd like to

>know who to tell my GP to refer me to to get it. I know there are

>specialists in Melbourne and Sydney - are there any mito doctors in

>Adelaide (that anyone here knows of and would suggest)? If I have to,

>I'll take time off work and go interstate, but I'd rather not.

>

>Thanks,

>

>Freya.

>

>

>

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