I got tentively diagnosed today!!!!!!!!

[Guest guest]

Hi Folks, I got tentatively diagnosed today with

thiamine-responsive PDH, based on my past

test results, symptoms, and MAJOR improvement in symptoms

with the usual

PDH-specific supplements.

It is thought by info out of s Hopkins that the THIAMINE

RESPONSIVE form of PDH is

one of the rarest of the mito diseases (ESPECIALLY IN ADULTS)

and also one of the ones with the most potential for a positive

prognoisis.

I also came home with a prescription for a scooter!

My doc DID go to the nmdf site and read up on it at my request.

She is so excited, too, not just for me,

but because she has other patients who she think probably have

other forms of mito. She a rare one, a

doc who is open minded, listens and gets excited to learn. She

was only running 3 1/2 hours late

today....and a whle lot LONGER once WE left!

Thanks to you for you guidance and support as I worked my way

through " this " . It's been a path

that I have been actively pursuing since '82 , though the earliest

symptoms MAY go back to childhhood. My doc thinks the Lyme

may have been a major trigger

and is excited to see if some other late stage neuro Lyme

patients who have become unresponsive to

treatment might not also have mito problems.

Iam happy, but pooped, especially since I virtually diagnosed

myself with some help from my friends and the Internet!

Best Wishes and thanks,

Anita

[Guest guest]

Anita,

I am thrilled for you that you have an answer finally. I know the long

wait and " just not knowing " is very very hard on the body and soul.

It also sounds like this is a keeper of a doc!

Anita wrote:

>Hi Folks, I got tentatively diagnosed today with

>thiamine-responsive PDH, based on my past

>test results, symptoms, and MAJOR improvement in symptoms

>with the usual

>PDH-specific supplements.

>

>It is thought by info out of s Hopkins that the THIAMINE

>RESPONSIVE form of PDH is

>one of the rarest of the mito diseases (ESPECIALLY IN ADULTS)

>and also one of the ones with the most potential for a positive

>prognoisis.

>

> I also came home with a prescription for a scooter!

>

>My doc DID go to the nmdf site and read up on it at my request.

>She is so excited, too, not just for me,

>but because she has other patients who she think probably have

>other forms of mito. She a rare one, a

>doc who is open minded, listens and gets excited to learn. She

>was only running 3 1/2 hours late

>today....and a whle lot LONGER once WE left!

>

>Thanks to you for you guidance and support as I worked my way

>through " this " . It's been a path

>that I have been actively pursuing since '82 , though the earliest

>symptoms MAY go back to childhhood. My doc thinks the Lyme

>may have been a major trigger

>and is excited to see if some other late stage neuro Lyme

>patients who have become unresponsive to

>treatment might not also have mito problems.

>

>Iam happy, but pooped, especially since I virtually diagnosed

>myself with some help from my friends and the Internet!

>

>Best Wishes and thanks,

>Anita

>

>

>

>

>

>

>

>

>Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Hi , Thanks so much for your good wishes, as only one

who has already gone through it can truely appreciate it!

Best Wishes,

Anita

(thiamine-responsive PDH)

> Anita,

>

> I am thrilled for you that you have an answer finally. I know the

long

> wait and " just not knowing " is very very hard on the body and

soul.

>

> It also sounds like this is a keeper of a doc!

>

>

>

[Guest guest]

Anita

I am so happy for you. I know what a long haul getting a diagnosis can be.

and I diagnosed ourselves as well. At least we had each other for

support during those trying years.

I'm also glad to hear that your doctor is excited about learning - those are

the gems.

I'm so happy for you that things are falling into place finally and that

although rare, it is a form of mito that is very treatable.

laurie

>

> Reply-To:

> Date: Fri, 18 Jun 2004 20:28:23 -0000

> To:

> Subject: I got tentively diagnosed today!!!!!!!!

>

> Hi Folks, I got tentatively diagnosed today with

> thiamine-responsive PDH, based on my past

> test results, symptoms, and MAJOR improvement in symptoms

> with the usual

> PDH-specific supplements.

>

> It is thought by info out of s Hopkins that the THIAMINE

> RESPONSIVE form of PDH is

> one of the rarest of the mito diseases (ESPECIALLY IN ADULTS)

> and also one of the ones with the most potential for a positive

> prognoisis.

>

> I also came home with a prescription for a scooter!

>

> My doc DID go to the nmdf site and read up on it at my request.

> She is so excited, too, not just for me,

> but because she has other patients who she think probably have

> other forms of mito. She a rare one, a

> doc who is open minded, listens and gets excited to learn. She

> was only running 3 1/2 hours late

> today....and a whle lot LONGER once WE left!

>

> Thanks to you for you guidance and support as I worked my way

> through " this " . It's been a path

> that I have been actively pursuing since '82 , though the earliest

> symptoms MAY go back to childhhood. My doc thinks the Lyme

> may have been a major trigger

> and is excited to see if some other late stage neuro Lyme

> patients who have become unresponsive to

> treatment might not also have mito problems.

>

> Iam happy, but pooped, especially since I virtually diagnosed

> myself with some help from my friends and the Internet!

>

> Best Wishes and thanks,

> Anita

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>