RE: Adult Mito/meta doctors/ Kim

[Guest guest]

Hi Kim,

I truly understand your frustration and your *Need* to know what type of Mito

disease you have, but it isn't as easy as we would like it to be. I also felt

the same way you did years ago. But my feelings have changed as I learned about

Mito.

So many people are just happy and pleased to get diagnosed, for some have waited

for 10 yrs. or more. It took them 10 yrs. to find out what was wrong with me. I

understand that isn't GOOD enough for you, and I hope that you get the answers

you are looking for in a short amount of time.

MDA Docs really do try to do the best they can. I think what we need is a

standard testing protocol that ALL doctors and Specialist can follow when they

believe they have a patient with a possible Mitochondrial Disorder.

Your MDA doc is actually right when he said " what difference does it

make....none of them are treatable. " It is very hard to accept that but we all

learn it is true. And it sounds like he doesn't want you to have to go through

more surgery and pain and not find any more answers.Plus surgery is risky for

Mito patients.

And even if you were to find out what type of Mito/Metabolic disorder you have

not everyone responds positively to the suggestions that are written for each

disorder. Even members in the same family who have the same disorder have

different signs/symptoms. No one is the same and no one responds the same.

Like the others said here, you always have the option of seeing a different MDA

Doctor, and you can even go out of state to find one that you are more

comfortable with.

You are still in the early stages of searching and testing and I do hope that

this last biopsy will provide all the answers you need.

Hugs,

Ann-Marie

Kim wrote:

I've been going to an MDA doc since last fall. He's found some

stuff, but no diagnosis yet. He said to me, " what difference does

it make which mitochondrial or metabolic disease it is, none of them

are treatable " . That additude doesn't make me very comfortable.

There are things that can be tried to help, and avoided to not cause

more damage, if you know which one. Hopefully if my second biopsy

results don't give a specific diagnosis, he'll keep looking.

Kim

----------

No virus found in this outgoing message.

Checked by AVG Anti-Virus.

Version: 7.0.308 / Virus Database: 266.9.6 - Release Date: 4/11/2005

[Guest guest]

Ya, I've only been this sick for 3 1/2 years. The point is, that

the MDA doc hasn't given me any diagnosis. I'm not being difficult,

he hasn't even been willing to say if I have mito or not for sure.

I would be happy with any diagnosis also. A specific diagnosis

would be very nice, but I'll be happy with any answers.

Kim

>

> I've been going to an MDA doc since last fall. He's found some

> stuff, but no diagnosis yet. He said to me, " what difference does

> it make which mitochondrial or metabolic disease it is, none of

them

> are treatable " . That additude doesn't make me very comfortable.

> There are things that can be tried to help, and avoided to not

cause

> more damage, if you know which one. Hopefully if my second biopsy

> results don't give a specific diagnosis, he'll keep looking.

> Kim

>

>

> ----------

>

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.308 / Virus Database: 266.9.6 - Release Date:

4/11/2005

>

>

>

[Guest guest]

As I mentioned earlier, I went to three other MDA clinics before I

found a MDA doctor who wasn't satisfied with my " probably " diagnosis

of myasthenia gravis. It's unfortunate that you have to deal with

this doctor, but like in any relationship, maybe it's time to let him

go...

But, like when leaving any relationship, it's best to have a back-up

waiting in the wings

Take care,

RH

> >

> > I've been going to an MDA doc since last fall. He's found some

> > stuff, but no diagnosis yet. He said to me, " what difference

does

> > it make which mitochondrial or metabolic disease it is, none of

> them

> > are treatable " . That additude doesn't make me very comfortable.

> > There are things that can be tried to help, and avoided to not

> cause

> > more damage, if you know which one. Hopefully if my second

biopsy

> > results don't give a specific diagnosis, he'll keep looking.

> > Kim

> >

> >

> > ----------

> >

> > No virus found in this outgoing message.

> > Checked by AVG Anti-Virus.

> > Version: 7.0.308 / Virus Database: 266.9.6 - Release Date:

> 4/11/2005

> >

> >

> >