Asking a question for a friend

[Guest guest]

Hi Laurie,

I didn't realize you and were sisters. :-) Do you live in different

parts of the country?

I am hoping to get to the next doctor chat next week, although I have thought

that for lots of the past ones..[g]...and maybe Dr Korson can answer that

question too. I guess it is not an important point, more a curiosity than

anything else. They can only figure out what they can figure out and if you

have

even a small chance of gaining information I guess you have to go for it, so in

the end it probably doesn't make that much difference.

Adam

In a message dated 5/13/2004 2:54:59 PM Eastern Standard Time,

writes:

> Adam

>

> I got to thinking about this and wonder if that statistic is for those who

> end up with a diagnosis of MEERF, MELAS, MID or some of the others. I have

> had two positive biopsies showing the complexes that aren't working

> properly, but don't have a specific kind of mito.

>

> on the list (who is my sister) sees Dr. Cohen and her biopsy was

> negative, but with the family history, lab results and family history, he

> feels she has mito.

>

> I will have to do some reading on the subject and see if I can figure it

> out.

>

> laurie

>

[Guest guest]

In a message dated 5/13/2004 5:22:03 AM Eastern Standard Time,

AdamM321@... writes:

I could have misunderstood what Dr Korson told me, but I believe I questioned

him to clarify as it seemed like such a low percentage. Dr Korson is at a

medical center that believes the live muscle biopsy is the way to go. But in

the Boston area there are other specialists who feel a frozen biopsy is just

as

good. I still can't figure out why.

Hi Adam,

Dr Korson told me something similar....He said that 20% of his patients don't

have a definitive mitochondrial diagnosis, but are highly suspected of having

it. Of those 20% about 1/2 were done frozen and 1/2 fresh. My biopsy, even

though it was done fresh, surprisingly showed very little. However, Dr K has

seen this before in several of his patients and still believes them all to have

mito based on lab results, clinical symptoms and family history.

Malisa

[Guest guest]

Laurie and I live about an hours drive from each other.

AdamM321@... wrote:

>Hi Laurie,

>

>I didn't realize you and were sisters. :-) Do you live in different

>parts of the country?

>

>I am hoping to get to the next doctor chat next week, although I have thought

>that for lots of the past ones..[g]...and maybe Dr Korson can answer that

>question too. I guess it is not an important point, more a curiosity than

>anything else. They can only figure out what they can figure out and if you

have

>even a small chance of gaining information I guess you have to go for it, so in

>the end it probably doesn't make that much difference.

>

>Adam

>

>

>

>

>In a message dated 5/13/2004 2:54:59 PM Eastern Standard Time,

> writes:

>

>

>

>>Adam

>>

>>I got to thinking about this and wonder if that statistic is for those who

>>end up with a diagnosis of MEERF, MELAS, MID or some of the others. I have

>>had two positive biopsies showing the complexes that aren't working

>>properly, but don't have a specific kind of mito.

>>

>> on the list (who is my sister) sees Dr. Cohen and her biopsy was

>>negative, but with the family history, lab results and family history, he

>>feels she has mito.

>>

>>I will have to do some reading on the subject and see if I can figure it

>>out.

>>

>>laurie

>>

>>

>>

>

>

>

>

[Guest guest]

Adam

I think the not knowing is the hard part. I have even found that with the

special education students I work with, that I have much better kids if I

explain why I am doing something.

laurie

> From: AdamM321@...

> Reply-To:

> Date: Thu, 13 May 2004 16:59:26 EDT

> To:

> Subject: Asking a question for a friend

>

> Hi Laurie,

>

> I didn't realize you and were sisters. :-) Do you live in different

> parts of the country?

>

> I am hoping to get to the next doctor chat next week, although I have thought

> that for lots of the past ones..[g]...and maybe Dr Korson can answer that

> question too. I guess it is not an important point, more a curiosity than

> anything else. They can only figure out what they can figure out and if you

> have

> even a small chance of gaining information I guess you have to go for it, so

> in

> the end it probably doesn't make that much difference.

>

> Adam

>

>

>

>

> In a message dated 5/13/2004 2:54:59 PM Eastern Standard Time,

> writes:

>

>> Adam

>>

>> I got to thinking about this and wonder if that statistic is for those who

>> end up with a diagnosis of MEERF, MELAS, MID or some of the others. I have

>> had two positive biopsies showing the complexes that aren't working

>> properly, but don't have a specific kind of mito.

>>

>> on the list (who is my sister) sees Dr. Cohen and her biopsy was

>> negative, but with the family history, lab results and family history, he

>> feels she has mito.

>>

>> I will have to do some reading on the subject and see if I can figure it

>> out.

>>

>> laurie

>>

>

>

>

>

[Guest guest]

to answer this- I was treated for lupus for 3-4 yrs, then they turned the

diagnosis to Mixed connective tissue disease which they still say I have. I also

was diagnosed with fibro/CFS in my teens. They also suspected MS several times

but never got the diagnosis. Another one to add would be lymes disease which

my rheumatologist was sure I had at first. The only other one that was

seriously looked into was mysthenia gravis which I know others on this list have

been

tested for and even diagnosed with in the past. Its amazing the multiple

misdiagnosises we all get and I really still wonder also if the autoimmune

disorders that some of us do have is possibly something in cooralation with

mito, who

knows. Anyways, this is my 2 cents.

take care,

Adrienne

[Guest guest]

Hi Adrienne,

For what it's worth, (maybe nothing I just felt I needed to share

this info with you about the Lyme Disease your rheumatlogist

thought you might have, especially if they " ruled it out " because

you had a negative results on your ELISA and/or Western Blot

tests.

I've spen t the past 13 years of doing volunteer work helping

Lyme Disease patients locate resources and doing Lyme

support. It has been my experience is rheumatologists are

perhap , the LEAST knowledgeable medical specialty in correctly

diagnosing Lyme. The two most common tests for Lyme are

thought by Lyme Literate docs to be exteremely unreliable,

especially if the test comes out negative. Also, because the

common test measures immune system response it's not at all

reliable for diagnosis in those whose immune systems are

impaired, or if a person has already been taking antibioitics

which supress the immune system response.

If you think there is any chance you might have been infected

with Lyme please consider trying to see a Lyme-literate doc. VA

has some very " hot " Lyme spots: the beach/coast, (especially

Chincoteague/Assoteague, and in the mountains. It's not

commonly known, but even the CDC admits that probably at

least 50% of those infected and have gotten positive diagnosis

never remember getting the characteristic rash.

There is currently A HUGE controversy within the medical

community over just how easy it diagnose and treat Lyme. From

my perspecitve, the rheumatogists are often not at all Lyme

literate-especially and very close minded to new research.

The best article I know of that offers an over view of Lyme and

also the raging controversy over its diagnosis and treatment is:

<< " Lyme Disease the Unknown Epidemic " published in the

Alternative Medicine Magazine. Many people believe that this is

one of THE best articles exploring the raging controversy within

the medical profession right now concerning the ease with

which Lyme can be diagnosed and treated. A MUST READ!

http://www.AlternativeMedicine.com

for this article scroll down to issue 41, click on " Go " then select

" Lyme Disease the Unknown Epidemic " from the table of

contents and click on the article. >>

I have a great deal of Lyme info resources in my database,

including a listing of Lyme literate docs in various areas that I'd

be happy to share with anyone who might be interested. Just

e-mail me personally. I'm not sure if personal e-mail can be sent

through from this group, though.

I just tried it with Adrienne and I'll know soon!

Best Wishes,

Anita

> to answer this- I was treated for lupus for 3-4 yrs, then they

turned the

> diagnosis to Mixed connective tissue disease which they still

say I have. I also

> was diagnosed with fibro/CFS in my teens. They also

suspected MS several times

> but never got the diagnosis. Another one to add would be

lymes disease which

> my rheumatologist was sure I had at first. The only other one

that was

> seriously looked into was mysthenia gravis which I know

others on this list have been

> tested for and even diagnosed with in the past. Its amazing the

multiple

> misdiagnosises we all get and I really still wonder also if the

autoimmune

> disorders that some of us do have is possibly something in

cooralation with mito, who

> knows. Anyways, this is my 2 cents.

> take care,

> Adrienne

>

>

>