Asking A Question For A Friend

[Guest guest]

Alice,

I was diagnosed Lupus.

[Guest guest]

How many of you had a diagnosis or an atypical diagnosis for either

MS or Lupus before you got your Mito diagnosis?

Let's do this here since many cannot access the polls section.

I can answer that I had an atypical diagnosis for both.

Alice

[Guest guest]

Let me add more to this question.

How many of you still don't have a Mito diagnosis and are diagnosed with

atypical MS, Lupus or Fybromyagia? If you can add anything else to this, please

go ahead.

Alice

Asking A Question For A Friend

How many of you had a diagnosis or an atypical diagnosis for either

MS or Lupus before you got your Mito diagnosis?

Let's do this here since many cannot access the polls section.

I can answer that I had an atypical diagnosis for both.

Alice

[Guest guest]

Alice,

Still not diagnosed, but diagnosis was originally fibromyalgia.

Just a note:

With a carnitine deficiency, and abnormal pulmonary function test --

mito is the docs only guess. But reading up on CHRONIC FATIGUE and

FIBROMYALGIA websites -- found several artices mentioning carnitine

deficiency in CFS and suspected mitochondrial dysfunction in CFS and

fibromyalgia. Articles date back to early 90s. Many articles were

written by Dr. Cheney. Also read an article recently about a

researcher speculating about the link between MS and mitochondrial

dysfunction.

Maggie

> Let me add more to this question.

>

> How many of you still don't have a Mito diagnosis and are

diagnosed with atypical MS, Lupus or Fybromyagia? If you can add

anything else to this, please go ahead.

>

> Alice

>

>

> Asking A Question For A Friend

>

>

> How many of you had a diagnosis or an atypical diagnosis for

either

>

> MS or Lupus before you got your Mito diagnosis?

>

> Let's do this here since many cannot access the polls section.

>

> I can answer that I had an atypical diagnosis for both.

>

> Alice

>

>

>

>

[Guest guest]

they thought fibromyalgia for me for sure, even though I didn't fit certain

criteria. Lupus was mentioned too, but never MS.

Smiles,

Re: Asking A Question For A Friend

> Alice,

> I was diagnosed Lupus.

>

>

>

>

[Guest guest]

I should of added CFS too.

Re: Asking A Question For A Friend

>

>

> > Alice,

> > I was diagnosed Lupus.

> >

> >

> >

> >

[Guest guest]

<< How many of you still don't have a Mito diagnosis and are

diagnosed with atypical MS, Lupus or Fybromyagia? If you can

add anything else to this, please go ahead.>>

I don't have a mito diagnosis, yet. I have been diagnosed with

Lyme Disease. Originally they thought MS, but later decided I

didn't have enough lesions in the brain to account for all my

symptoms. I have also been diagnosed with CFS ( and my

Epstein Barr numbers are significant). I sure have a lot of the

same symptoms as Fibromyalgia, also, but my doc thinks

there's " something else " causing it all.

I'm totally blown away to be following this thread. Seems like a

lot of folks have similar health histories. For a newbie like me

who has felt totally alone in this for the past 20-something years,

that's kind of amazing.

Anita

[Guest guest]

Anita,

FYI.. I was also told I had lyme antibodies so I have had Lyme sometime in my

past but I haven't.

Alice

Re: Asking A Question For A Friend

<< How many of you still don't have a Mito diagnosis and are

diagnosed with atypical MS, Lupus or Fybromyagia? If you can

add anything else to this, please go ahead.>>

I don't have a mito diagnosis, yet. I have been diagnosed with

Lyme Disease. Originally they thought MS, but later decided I

didn't have enough lesions in the brain to account for all my

symptoms. I have also been diagnosed with CFS ( and my

Epstein Barr numbers are significant). I sure have a lot of the

same symptoms as Fibromyalgia, also, but my doc thinks

there's " something else " causing it all.

I'm totally blown away to be following this thread. Seems like a

lot of folks have similar health histories. For a newbie like me

who has felt totally alone in this for the past 20-something years,

that's kind of amazing.

Anita

[Guest guest]

Not me.

Alice wrote:

>How many of you had a diagnosis or an atypical diagnosis for either

>

>MS or Lupus before you got your Mito diagnosis?

>

>Let's do this here since many cannot access the polls section.

>

> I can answer that I had an atypical diagnosis for both.

>

>Alice

>

>

>

>

[Guest guest]

Maggie

There is some thought that all of these, plus Parkinson's, alzhimers, etc.

are all involved in the mito spectrum. I have a feeling (just a guess) that

mito will become a spectrum disorder like autism, and each of these will

fall somewhere on the continuum.

laurie

>

> Reply-To:

> Date: Tue, 11 May 2004 17:12:41 -0000

> To:

> Subject: Re: Asking A Question For A Friend

>

> Alice,

> Still not diagnosed, but diagnosis was originally fibromyalgia.

>

> Just a note:

> With a carnitine deficiency, and abnormal pulmonary function test --

> mito is the docs only guess. But reading up on CHRONIC FATIGUE and

> FIBROMYALGIA websites -- found several artices mentioning carnitine

> deficiency in CFS and suspected mitochondrial dysfunction in CFS and

> fibromyalgia. Articles date back to early 90s. Many articles were

> written by Dr. Cheney. Also read an article recently about a

> researcher speculating about the link between MS and mitochondrial

> dysfunction.

>

>

> Maggie

>

>

>

>> Let me add more to this question.

>>

>> How many of you still don't have a Mito diagnosis and are

> diagnosed with atypical MS, Lupus or Fybromyagia? If you can add

> anything else to this, please go ahead.

>>

>> Alice

>>

>>

>> Asking A Question For A Friend

>>

>>

>> How many of you had a diagnosis or an atypical diagnosis for

> either

>>

>> MS or Lupus before you got your Mito diagnosis?

>>

>> Let's do this here since many cannot access the polls section.

>>

>> I can answer that I had an atypical diagnosis for both.

>>

>> Alice

>>

>>

>>

>>

[Guest guest]

I am diagnosed, but was told at first that it was Chronic Fatigue, Lyme

Disease and Fibromialga. Also " all in my head "

Smiles,

a

On Tue, 11 May 2004 12:44:24 -0600 " Alice " justagram@...>

writes:

Anita,

FYI.. I was also told I had lyme antibodies so I have had Lyme sometime

in my past but I haven't.

Alice

[Guest guest]

Hi a, Your health history shares some of the same " high

points " as mine....even the " it's all in your head " . Glad to hear you

are diagnosed and hope your good days outnumber your bad

ones.

Anita

[Guest guest]

Maggie,

there is a MS like syndrome associated with LHON.