Re: adult mito/meta doctors

April 11, 2005

Kim

I see Dr. Cohen but he doesn't take on new adult patients most of the

time, but it seems to vary.

There are a handful of mito docs that see adults. What area of the

county are you in? Someone in that area might be able to help you.

laurie

>

> Does he not deal with adults? If not, who's best for adults in the

> country?

> Kim

>

> > > >

> > > > Does anyone have the addresses for Dr Cohen (Cleveland), and

> Dr

> > > > Shoffner (Atlanta)?

> > > > My internist wants to send them an overview of my situation

> and ask

> > > > for their opinion.

> > > > Thanks,

> > > > Kim

> > >

> > > 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.

> > >

> > > _____

> > >

April 11, 2005

I'm in Illinois.

Kim

> > > > >

> > > > > Does anyone have the addresses for Dr Cohen (Cleveland),

and

> > Dr

> > > > > Shoffner (Atlanta)?

> > > > > My internist wants to send them an overview of my

situation

> > and ask

> > > > > for their opinion.

> > > > > Thanks,

> > > > > Kim

> > > >

> > > > 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.

> > > >

> > > > _____

> > > >

April 11, 2005

Kim

I am in Michigan and see Dr. Cohen once a year. Have you tried an MDA

clinic? That is where I am followed for the most part. There are some

who have been diagnosed at University of Michigan Hospital, but I

don't know any names.

laurie

>

> I'm in Illinois.

> Kim

>

> > > > > >

> > > > > > Does anyone have the addresses for Dr Cohen (Cleveland),

> and

> > > Dr

> > > > > > Shoffner (Atlanta)?

> > > > > > My internist wants to send them an overview of my

> situation

> > > and ask

> > > > > > for their opinion.

> > > > > > Thanks,

> > > > > > Kim

> > > > >

> > > > > 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.

> > > > >

> > > > > _____

> > > > >

April 11, 2005

Kim

I am in Michigan and see Dr. Cohen once a year. Have you tried an MDA

clinic? That is where I am followed for the most part. There are some

who have been diagnosed at University of Michigan Hospital, but I

don't know any names.

laurie

>

> I'm in Illinois.

> Kim

>

> > > > > >

> > > > > > Does anyone have the addresses for Dr Cohen (Cleveland),

> and

> > > Dr

> > > > > > Shoffner (Atlanta)?

> > > > > > My internist wants to send them an overview of my

> situation

> > > and ask

> > > > > > for their opinion.

> > > > > > Thanks,

> > > > > > Kim

> > > > >

> > > > > 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.

> > > > >

> > > > > _____

> > > > >

April 11, 2005

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

> > > > > > >

> > > > > > > Does anyone have the addresses for Dr Cohen

(Cleveland),

> > and

> > > > Dr

> > > > > > > Shoffner (Atlanta)?

> > > > > > > My internist wants to send them an overview of my

> > situation

> > > > and ask

> > > > > > > for their opinion.

> > > > > > > Thanks,

> > > > > > > Kim

> > > > > >

> > > > > > 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.

> > > > > >

> > > > > > _____

> > > > > >

April 12, 2005

Some know more about mito then others. I can't stand that type of

fatalistic attitude some docs take with us.

Good luck.

klaga5 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

>

>>>

>>>>>>>>Does anyone have the addresses for Dr Cohen

>>>>>>>>

>(Cleveland),

>

>>>and

>>>

>>>>>Dr

>>>>>

>>>>>>>>Shoffner (Atlanta)?

>>>>>>>>My internist wants to send them an overview of my

>>>>>>>>

>>>situation

>>>

>>>>>and ask

>>>>>

>>>>>>>>for their opinion.

>>>>>>>>Thanks,

>>>>>>>>Kim

>>>>>>>>

>>>>>>>

>>>>>>>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.

>>>>>

>>>>>>>

>>>>>>> _____

>>>>>>>

April 12, 2005

Kim,

Hi! Where about are you in Illinois? I am in Cedar Rapids,

Iowa, but have family spread throughout Iowa and Illinois, plus a few

other states. Dr. Peltier up in Milwaukee, does work with adult mito

patients. There are a few on this list that have seen her, but

experiences have been different for each one. You can e-mail me off list

if you have any questions about her.

Smiles,

a

On Mon, 11 Apr 2005 21:40:45 -0000 " klaga5 " klaga5@...> writes:

I'm in Illinois.

Kim

--- In , Laurie Fitzgerald

April 12, 2005

Kim

I know that I have a complex I defect (0), yet they were not able to

find the mtDNA defect. Treatment is trial and error at best. Logic

would say that a high fat diet would work for me as fat comes in at

complex II, but I can't handle it and it seems to make me feel worse.

Dr. Cohen said that this was the experience of others with a complex I

defect. He said to try different food types and see what helped. For

me, a diagnosis of mito after 15 years was a big plus. I would have

liked to have been able to find out if the defect was a mtDNA or nDNA,

so my sons would have this knowledge in deciding if they should have

children.

I am on the supplements and my symptoms are being treated and that has

slowed my progression a lot.

I guess I'm saying that the MDA doc was somewhat correct and that with

time, the two of you might be able to learn together. My MDA doc

didn't know anything about mito when my family was diagnosed, but is

now very knowledgable. It isn't so much that he has answers for me,

but he knows what kinds of things should be checked and possible

treatments, but it often means going to another specialist. He is an

adult neuro and a good internist with a unbeliveable memory.

laurie

>

> Kim,

> Hi! Where about are you in Illinois? I am in Cedar Rapids,

> Iowa, but have family spread throughout Iowa and Illinois, plus a few

> other states. Dr. Peltier up in Milwaukee, does work with adult mito

> patients. There are a few on this list that have seen her, but

> experiences have been different for each one. You can e-mail me off list

> if you have any questions about her.

>

> Smiles,

> a

>

> On Mon, 11 Apr 2005 21:40:45 -0000 " klaga5 " klaga5@...> writes:

>

> I'm in Illinois.

> Kim

> --- In , Laurie Fitzgerald

>

April 12, 2005

I see a MDA physcian at UNC-Chapel Hill,NC but I am not sure if she is a mito.

specialist. I don't think so. Does anyone know someone in NC? My dr is Dr

Caroline Klein . She is very good and has been trying to get to the bottom of

what is wrong and I finally got a diagnosis of mitochondrial myopathy. She is

trying to narrow it down further by doing additional test on my biopsy, SHe is

doing a mitochondrial enzyme deficiency myopathy panel and lipid storage

myopathy profile. My biopsy showed increased lipid drops. Well, I guess I got

off topic but sometimes I feel so alone with all of this.

a C Koch kckoch76@...> wrote:

Kim,

Hi! Where about are you in Illinois? I am in Cedar Rapids,

Iowa, but have family spread throughout Iowa and Illinois, plus a few

other states. Dr. Peltier up in Milwaukee, does work with adult mito

patients. There are a few on this list that have seen her, but

experiences have been different for each one. You can e-mail me off list

if you have any questions about her.

Smiles,

a

On Mon, 11 Apr 2005 21:40:45 -0000 " klaga5 " klaga5@...> writes:

I'm in Illinois.

Kim

--- In , Laurie Fitzgerald

April 12, 2005

I tried to e-mail you privately and it didn't go through. What is

your address?

Thanks,

Kim

> Kim,

> Hi! Where about are you in Illinois? I am in Cedar

Rapids,

> Iowa, but have family spread throughout Iowa and Illinois, plus a

few

> other states. Dr. Peltier up in Milwaukee, does work with adult

mito

> patients. There are a few on this list that have seen her, but

> experiences have been different for each one. You can e-mail me

off list

> if you have any questions about her.

>

> Smiles,

> a

>

> On Mon, 11 Apr 2005 21:40:45 -0000 " klaga5 " writes:

>

> I'm in Illinois.

> Kim

> --- In , Laurie Fitzgerald

>

April 12, 2005

Did you have a fresh biopsy? Someone on another list just posted

that only cleveland and atlanta do fresh biopsy. I even posted a

form from my hospital with instructions for fresh biopsy, but she

swears it's only done in two places. I don't know what to think.

I try to eat different things and see if it effects how I feel. The

only thing so far that seems consistent is if I eat too much carbs I

feel rotten.

It would be better to know what I have, and get some guidance on

what to eat, and what to avoid. Also if there are suppliments that

could help. Oh well, I can dream.

Kim

> >

> > Kim,

> > Hi! Where about are you in Illinois? I am in Cedar

Rapids,

> > Iowa, but have family spread throughout Iowa and Illinois, plus

a few

> > other states. Dr. Peltier up in Milwaukee, does work with adult

mito

> > patients. There are a few on this list that have seen her, but

> > experiences have been different for each one. You can e-mail me

off list

> > if you have any questions about her.

> >

> > Smiles,

> > a

> >

> > On Mon, 11 Apr 2005 21:40:45 -0000 " klaga5 " writes:

> >

> > I'm in Illinois.

> > Kim

> > --- In , Laurie Fitzgerald

> >

April 12, 2005

San Diego also does fresh biopsies and I believe Columbia (NY) is now doing

them also. That would make four institutions that can offer immediate

testing on fresh tissue.

B

_____

From: klaga5

Sent: Tuesday, April 12, 2005 8:51 AM

To:

Subject: Re: adult mito/meta doctors

Did you have a fresh biopsy? Someone on another list just posted

that only cleveland and atlanta do fresh biopsy. I even posted a

form from my hospital with instructions for fresh biopsy, but she

swears it's only done in two places. I don't know what to think.

I try to eat different things and see if it effects how I feel. The

only thing so far that seems consistent is if I eat too much carbs I

feel rotten.

It would be better to know what I have, and get some guidance on

what to eat, and what to avoid. Also if there are suppliments that

could help. Oh well, I can dream.

Kim

> >

> > Kim,

> > Hi! Where about are you in Illinois? I am in Cedar

Rapids,

> > Iowa, but have family spread throughout Iowa and Illinois, plus

a few

> > other states. Dr. Peltier up in Milwaukee, does work with adult

mito

> > patients. There are a few on this list that have seen her, but

> > experiences have been different for each one. You can e-mail me

off list

> > if you have any questions about her.

> >

> > Smiles,

> > a

> >

> > On Mon, 11 Apr 2005 21:40:45 -0000 " klaga5 " writes:

> >

> > I'm in Illinois.

> > Kim

> > --- In , Laurie Fitzgerald

> >

April 12, 2005

And Washington University / Hospital St Louis.

That makes 5.

Kim

> > >

> > > Kim,

> > > Hi! Where about are you in Illinois? I am in Cedar

> Rapids,

> > > Iowa, but have family spread throughout Iowa and Illinois,

plus

> a few

> > > other states. Dr. Peltier up in Milwaukee, does work with

adult

> mito

> > > patients. There are a few on this list that have seen her, but

> > > experiences have been different for each one. You can e-mail

me

> off list

> > > if you have any questions about her.

> > >

> > > Smiles,

> > > a

> > >

> > > On Mon, 11 Apr 2005 21:40:45 -0000 " klaga5 "

writes:

> > >

> > > I'm in Illinois.

> > > Kim

> > > --- In , Laurie Fitzgerald

> > >

April 12, 2005

And Washington University / Hospital St Louis.

That makes 5.

Kim

> > >

> > > Kim,

> > > Hi! Where about are you in Illinois? I am in Cedar

> Rapids,

> > > Iowa, but have family spread throughout Iowa and Illinois,

plus

> a few

> > > other states. Dr. Peltier up in Milwaukee, does work with

adult

> mito

> > > patients. There are a few on this list that have seen her, but

> > > experiences have been different for each one. You can e-mail

me

> off list

> > > if you have any questions about her.

> > >

> > > Smiles,

> > > a

> > >

> > > On Mon, 11 Apr 2005 21:40:45 -0000 " klaga5 "

writes:

> > >

> > > I'm in Illinois.

> > > Kim

> > > --- In , Laurie Fitzgerald

> > >

April 12, 2005

Just for comparison, I also have a complete Complex I activity defect

(0 activity as well on fresh muscle biopsy), but my symptoms are

somewhat different. I am doing well on a high fat, high protein

diet, and really notice when I go off it (like yesterday when I *had*

to have wonton soup).

My doctor said a high fat diet would be bad for me, but it worked

well for me (should we switch doctors, Laurie?). I have high blood

ammonia, but the GI doctor told me that my high protein diet is okay,

because they think my liver is okay.

We also don't know if the defect is mtDNA or nDNA, but the thought is

that it is not mtDNA because I have many people with symptoms on my

paternal side. My overall thought is that it is autoimmune, and/or

related to continuous erythromycin use during my teenage years. To

my understanding, if antibodies from my body are attacking the

mitochondria, the genetics of the mitochondrial proteins would be

fine, but the genetics of the immmune system cells might be messed

up. So I wouldn't expect them to find a genetic mitochondrial defect

if my mito disease is of autoimmune origin.

Regarding the subject line, I am traveling 5 hours to see Dr. Korson

in Boston, he is a highly recommended metabolic doctor.

Take care,

RH

> >

> > Kim,

> > Hi! Where about are you in Illinois? I am in Cedar

Rapids,

> > Iowa, but have family spread throughout Iowa and Illinois, plus a

few

> > other states. Dr. Peltier up in Milwaukee, does work with adult

mito

> > patients. There are a few on this list that have seen her, but

> > experiences have been different for each one. You can e-mail me

off list

> > if you have any questions about her.

> >

> > Smiles,

> > a

> >

> > On Mon, 11 Apr 2005 21:40:45 -0000 " klaga5 " writes:

> >

> > I'm in Illinois.

> > Kim

> > --- In , Laurie Fitzgerald

> >

April 12, 2005