recently diagnosed mito dz

[Guest guest]

I am 45 years old and was recently diagnosed with mitochondrial

disease by muscle biopsy. I have myopathy as well as autonomic

symptoms including nausea and anorexia, bouts of diarrhea, some

dizziness and light-headedness, and occasional orthostatic

hypotension. I currently do not have a physician who is specialized

or very familar with treatment of this disease, and am in great need

of finding a top specialist in this area. I live in the south but I

would be willing to go anywhere in the U.S. Does anyone know of a

physician who has strong clinical skills and who also is on the

cutting edge of the latest treatments?

I would also be interested in hearing from any one with similar

problems, anything you might have done to alleviate or help with

these symptoms, and if or how much your disease has progressed over

time.

[Guest guest]

Hello,

If you are near Atlanta, Dr. Shoffner is the guy. He will need a

recommendation and clinical history from your regular doctor. His contact

information is:

Dr. M. Shoffner, MD

Neurology, Biochemical Genetics, Molecular Genetics

Horizon Molecular Medicine

4855 Peachtree Industrial Blvd.

Norcross, GA 30092

Fax

As for you symptoms, I have IBS, dizziness and light-headedness, muscle pain and

weakness, joint pain, persistent general fatigue, anxiety and panic attacks,

head pressure, cognitive problems...

I was diagnosed about a year ago with a complex I defect by a muscle biopsy, but

have had the problem for 5 years now which was age 45 for me too. Welcome.

Lea

recently diagnosed mito dz

I am 45 years old and was recently diagnosed with mitochondrial

disease by muscle biopsy. I have myopathy as well as autonomic

symptoms including nausea and anorexia, bouts of diarrhea, some

dizziness and light-headedness, and occasional orthostatic

hypotension. I currently do not have a physician who is specialized

or very familar with treatment of this disease, and am in great need

of finding a top specialist in this area. I live in the south but I

would be willing to go anywhere in the U.S. Does anyone know of a

physician who has strong clinical skills and who also is on the

cutting edge of the latest treatments?

I would also be interested in hearing from any one with similar

problems, anything you might have done to alleviate or help with

these symptoms, and if or how much your disease has progressed over

time.

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]

Welcome to the group. I hope we can provide you with friendship and support.

I think that there is so much variation in mito, that what seems like

similar symptoms might have a different response to treatment or inability

to tolerate it and the progression might be at one end of the spectrum to

the other.

I think the mito cocktail has helped to slow my progression. This is not to

say that there has been no progression. Mine has increased with age. Since

the aging process is caused by damage to the mitochondria, it would seem

natural to have this happen - kind of like a double dose of aging.

laurie

>

> Reply-To:

> Date: Sun, 16 Jan 2005 02:33:04 -0000

> To:

> Subject: recently diagnosed mito dz

>

>

>

> I am 45 years old and was recently diagnosed with mitochondrial

> disease by muscle biopsy. I have myopathy as well as autonomic

> symptoms including nausea and anorexia, bouts of diarrhea, some

> dizziness and light-headedness, and occasional orthostatic

> hypotension. I currently do not have a physician who is specialized

> or very familar with treatment of this disease, and am in great need

> of finding a top specialist in this area. I live in the south but I

> would be willing to go anywhere in the U.S. Does anyone know of a

> physician who has strong clinical skills and who also is on the

> cutting edge of the latest treatments?

> I would also be interested in hearing from any one with similar

> problems, anything you might have done to alleviate or help with

> these symptoms, and if or how much your disease has progressed over

> time.

>

>

>

>

>

>

>

>

>

> 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]

Thanks for your rapid response!

I have read that there is tremendous variability among different individuals,

even among family members. I have found a good bit of variability in

symptoms/physical findings even with myself with different " flares " ( I have

been overtly symptomatic for 7 months, but retrospectively, probably about 3-4

years). Its lack of predictability is one thing I find extremely frustrating.

I am hoping that, with time, I will learn my tolerance for different activities.

I have only been diagnosed in the last month, and have just started the vitamin

cocktail. I hope that it helps.

Thanks for the welcome!

recently diagnosed mito dz

>

>

>

> I am 45 years old and was recently diagnosed with mitochondrial

> disease by muscle biopsy. I have myopathy as well as autonomic

> symptoms including nausea and anorexia, bouts of diarrhea, some

> dizziness and light-headedness, and occasional orthostatic

> hypotension. I currently do not have a physician who is specialized

> or very familar with treatment of this disease, and am in great need

> of finding a top specialist in this area. I live in the south but I

> would be willing to go anywhere in the U.S. Does anyone know of a

> physician who has strong clinical skills and who also is on the

> cutting edge of the latest treatments?

> I would also be interested in hearing from any one with similar

> problems, anything you might have done to alleviate or help with

> these symptoms, and if or how much your disease has progressed over

> time.

>

>

>

>

>

>

>

>

>

> 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]

Thanks for your rapid response and the welcome!

I live in Mississippi, but Atlanta is easily accessible by a short plane flight.

Is mit. dz. Dr. Shoffner's primary area of interest and practice? Does he see

predominantly adults? It sounds as though you have been extremely pleased with

your care from him. I am looking for someone who can give me some guidance (if

he can) as to what I might expect based on the course of my disease so far, and

provide recommendations as to lifestyle changes that might help symptoms or slow

the progression of disease. I also hope to find someone very familiar with the

treatment of symptoms as the last 6 weeks have been pretty miserable for me. It

sounds as though we have many similar symptoms. I forgot to mention in my

original e-mail myalgias and incredible fatigue-2 of my more debilitating

problems. I also have a severe cold intolerance (thank goodness I live in the

south), and Renauyd's.

Thanks again!

-- Original Message -----

From: Lea

To:

Sent: Saturday, January 15, 2005 9:48 PM

Subject: Re: recently diagnosed mito dz

Hello,

If you are near Atlanta, Dr. Shoffner is the guy. He will need a

recommendation and clinical history from your regular doctor. His contact

information is:

Dr. M. Shoffner, MD

Neurology, Biochemical Genetics, Molecular Genetics

Horizon Molecular Medicine

4855 Peachtree Industrial Blvd.

Norcross, GA 30092

Fax

As for you symptoms, I have IBS, dizziness and light-headedness, muscle pain

and weakness, joint pain, persistent general fatigue, anxiety and panic attacks,

head pressure, cognitive problems...

I was diagnosed about a year ago with a complex I defect by a muscle biopsy,

but have had the problem for 5 years now which was age 45 for me too. Welcome.

Lea

recently diagnosed mito dz

I am 45 years old and was recently diagnosed with mitochondrial

disease by muscle biopsy. I have myopathy as well as autonomic

symptoms including nausea and anorexia, bouts of diarrhea, some

dizziness and light-headedness, and occasional orthostatic

hypotension. I currently do not have a physician who is specialized

or very familar with treatment of this disease, and am in great need

of finding a top specialist in this area. I live in the south but I

would be willing to go anywhere in the U.S. Does anyone know of a

physician who has strong clinical skills and who also is on the

cutting edge of the latest treatments?

I would also be interested in hearing from any one with similar

problems, anything you might have done to alleviate or help with

these symptoms, and if or how much your disease has progressed over

time.

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]

Dr. Shoffner is a mito specialist. He sees no other kind of patient to my

knowledge. I went from Michigan to Atlanta for my biopsy as he was one of

only two doing fresh biopsies. Is is also one of the few who do genetic

testing and many facilities send their frozen sections to him for analysis.

He use to only do the lab work, but now sees patients for treatment as well.

He is a nice person and extremely knowledgable. He sees adults, but I have

no idea how hard it is to get in to see him for treatment.

laurie

>

> Reply-To:

> Date: Sat, 15 Jan 2005 23:49:03 -0600

> To: >

> Subject: Re: recently diagnosed mito dz

>

>

> Thanks for your rapid response and the welcome!

>

> I live in Mississippi, but Atlanta is easily accessible by a short plane

> flight. Is mit. dz. Dr. Shoffner's primary area of interest and practice?

> Does he see predominantly adults? It sounds as though you have been extremely

> pleased with your care from him. I am looking for someone who can give me

> some guidance (if he can) as to what I might expect based on the course of my

> disease so far, and provide recommendations as to lifestyle changes that might

> help symptoms or slow the progression of disease. I also hope to find someone

> very familiar with the treatment of symptoms as the last 6 weeks have been

> pretty miserable for me. It sounds as though we have many similar symptoms.

> I forgot to mention in my original e-mail myalgias and incredible fatigue-2 of

> my more debilitating problems. I also have a severe cold intolerance (thank

> goodness I live in the south), and Renauyd's.

> Thanks again!

>

>

> -- Original Message -----

> From: Lea

> To:

> Sent: Saturday, January 15, 2005 9:48 PM

> Subject: Re: recently diagnosed mito dz

>

>

>

> Hello,

>

> If you are near Atlanta, Dr. Shoffner is the guy. He will need a

> recommendation and clinical history from your regular doctor. His contact

> information is:

> Dr. M. Shoffner, MD

> Neurology, Biochemical Genetics, Molecular Genetics

> Horizon Molecular Medicine

> 4855 Peachtree Industrial Blvd.

> Norcross, GA 30092

>

> Fax

>

> As for you symptoms, I have IBS, dizziness and light-headedness, muscle pain

> and weakness, joint pain, persistent general fatigue, anxiety and panic

> attacks, head pressure, cognitive problems...

>

> I was diagnosed about a year ago with a complex I defect by a muscle biopsy,

> but have had the problem for 5 years now which was age 45 for me too.

> Welcome.

> Lea

>

>

> recently diagnosed mito dz

>

>

>

>

> I am 45 years old and was recently diagnosed with mitochondrial

> disease by muscle biopsy. I have myopathy as well as autonomic

> symptoms including nausea and anorexia, bouts of diarrhea, some

> dizziness and light-headedness, and occasional orthostatic

> hypotension. I currently do not have a physician who is specialized

> or very familar with treatment of this disease, and am in great need

> of finding a top specialist in this area. I live in the south but I

> would be willing to go anywhere in the U.S. Does anyone know of a

> physician who has strong clinical skills and who also is on the

> cutting edge of the latest treatments?

> I would also be interested in hearing from any one with similar

> problems, anything you might have done to alleviate or help with

> these symptoms, and if or how much your disease has progressed over

> time.

>

>

>

>

>

>

>

>

>

> 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]

It took me a long time to be able to listen to my body. For me, frequent

rest periods of about 15 minutes helps more than 2 hours after pushing

myself.

Learning to sit while cooking or doing dishes and using a scooter while

shopping, helped the most. I now use a power chair outside the house and

walk some in the house.

Just a couple words of caution. Many of us have found that starting on large

doses of supplements or meds give us trouble. I had to start at a low dose

and build up slowly. The other is that some research on Parkinson's has

shown that CoQ10 might be worthless until the dosage is increased to a much

higher level than thought necessary. The research indicated improvement at

the 1000 to 1200 mg. range. My MDA doctor has me on 240 mg. four times a day

- this is the Q-gel which is more bio-available so actually like a bigger

dose. It wasn't until I got to this level that I saw improvement. Of course,

some, and maybe you do well on a much lower dose.

laurie

>

> Reply-To:

> Date: Sat, 15 Jan 2005 23:19:26 -0600

> To: >

> Subject: Re: recently diagnosed mito dz

>

>

> Thanks for your rapid response!

> I have read that there is tremendous variability among different individuals,

> even among family members. I have found a good bit of variability in

> symptoms/physical findings even with myself with different " flares " ( I have

> been overtly symptomatic for 7 months, but retrospectively, probably about 3-4

> years). Its lack of predictability is one thing I find extremely frustrating.

> I am hoping that, with time, I will learn my tolerance for different

> activities.

> I have only been diagnosed in the last month, and have just started the

> vitamin cocktail. I hope that it helps.

> Thanks for the welcome!

>

> recently diagnosed mito dz

>>

>>

>>

>> I am 45 years old and was recently diagnosed with mitochondrial

>> disease by muscle biopsy. I have myopathy as well as autonomic

>> symptoms including nausea and anorexia, bouts of diarrhea, some

>> dizziness and light-headedness, and occasional orthostatic

>> hypotension. I currently do not have a physician who is specialized

>> or very familar with treatment of this disease, and am in great need

>> of finding a top specialist in this area. I live in the south but I

>> would be willing to go anywhere in the U.S. Does anyone know of a

>> physician who has strong clinical skills and who also is on the

>> cutting edge of the latest treatments?

>> I would also be interested in hearing from any one with similar

>> problems, anything you might have done to alleviate or help with

>> these symptoms, and if or how much your disease has progressed over

>> time.

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> 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 ,

Dr. Shoffner is an expert in Mitochondrial disease. He has adult patients as

well as children. I think it would be worthwhile for you to visit with him and

see what he says.

I don't know that there is a real " treatment " for mito except taking

supplements and perhaps Carnitor if you have a carnitine deficiency.

I also have trouble regulating my temperature and am frequently cold, and I

have a lot of trouble sleeping. I don't have Raynaud's Syndrome however.

Lea

Thanks for your rapid response and the welcome!

I live in Mississippi, but Atlanta is easily accessible by a short plane

flight. Is mit. dz. Dr. Shoffner's primary area of interest and practice? Does

he see predominantly adults? It sounds as though you have been extremely

pleased with your care from him. I am looking for someone who can give me some

guidance (if he can) as to what I might expect based on the course of my

disease so far, and provide recommendations as to lifestyle changes that might

help symptoms or slow the progression of disease. I also hope to find someone

very familiar with the treatment of symptoms as the last 6 weeks have been

pretty miserable for me. It sounds as though we have many similar symptoms. I

forgot to mention in my original e-mail myalgias and incredible fatigue-2 of my

more debilitating problems. I also have a severe cold intolerance (thank

goodness I live in the south), and Renauyd's.

Thanks again!

[Guest guest]

Good advise Laurie. I find that trying to push usually results in a crash.

Small increments of activity followed by rest is the best idea.

Lea

It took me a long time to be able to listen to my body. For me, frequent

rest periods of about 15 minutes helps more than 2 hours after pushing

myself.

laurie

[Guest guest]

On a similar note, it is sometimes easy to say ALL of our various

symptoms and maladies are due to mito, but my mito doc is very

careful to explore other possibilities. I have high blood ammonia

(when untreated), and my neuro insisted I go to a GI doctor before

she treated me for it. The GI doctor confirmed that my liver and

kidneys were okay, and treated me for it. It still may be from

my " mito disease " , but it was important to rule out other, more

common causes.

I hope you are able to find a knowledgeable mito doc soon to address

your issues...

Take care,

RH

> Welcome to the group. I hope we can provide you with friendship and

support.

>

> I think that there is so much variation in mito, that what seems

like

> similar symptoms might have a different response to treatment or

inability

> to tolerate it and the progression might be at one end of the

spectrum to

> the other.

>

> I think the mito cocktail has helped to slow my progression. This

is not to

> say that there has been no progression. Mine has increased with

age. Since

> the aging process is caused by damage to the mitochondria, it would

seem

> natural to have this happen - kind of like a double dose of aging.

>

> laurie

>

> > From: " md1321jht "

> > Reply-To:

> > Date: Sun, 16 Jan 2005 02:33:04 -0000

> > To:

> > Subject: recently diagnosed mito dz

> >

> >

> >

> > I am 45 years old and was recently diagnosed with mitochondrial

> > disease by muscle biopsy. I have myopathy as well as autonomic

> > symptoms including nausea and anorexia, bouts of diarrhea, some

> > dizziness and light-headedness, and occasional orthostatic

> > hypotension. I currently do not have a physician who is

specialized

> > or very familar with treatment of this disease, and am in great

need

> > of finding a top specialist in this area. I live in the south

but I

> > would be willing to go anywhere in the U.S. Does anyone know of a

> > physician who has strong clinical skills and who also is on the

> > cutting edge of the latest treatments?

> > I would also be interested in hearing from any one with similar

> > problems, anything you might have done to alleviate or help with

> > these symptoms, and if or how much your disease has progressed

over

> > time.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > 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]

I wonder if there are any mito docs who primarily see adults, as kids

who are affected tend to be more severely affected, and need more

urgent and frequent care...

I think (guys, correct me if I'm wrong) the best we can do is see a

mito doc who *does* see adults, some won't see adults at all, that

is, unless the patient had mito disease as a kid as well and was

being followed up...

Take care,

RH

>

> Thanks for your rapid response and the welcome!

>

> I live in Mississippi, but Atlanta is easily accessible by a short

plane flight. Is mit. dz. Dr. Shoffner's primary area of interest

and practice? Does he see predominantly adults? It sounds as though

you have been extremely pleased with your care from him. I am

looking for someone who can give me some guidance (if he can) as to

what I might expect based on the course of my disease so far, and

provide recommendations as to lifestyle changes that might help

symptoms or slow the progression of disease. I also hope to find

someone very familiar with the treatment of symptoms as the last 6

weeks have been pretty miserable for me. It sounds as though we have

many similar symptoms. I forgot to mention in my original e-mail

myalgias and incredible fatigue-2 of my more debilitating problems.

I also have a severe cold intolerance (thank goodness I live in the

south), and Renauyd's.

> Thanks again!

>

>

> -- Original Message -----

> From: Lea

> To:

> Sent: Saturday, January 15, 2005 9:48 PM

> Subject: Re: recently diagnosed mito dz

>

>

>

> Hello,

>

> If you are near Atlanta, Dr. Shoffner is the guy. He will

need a recommendation and clinical history from your regular doctor.

His contact information is:

> Dr. M. Shoffner, MD

> Neurology, Biochemical Genetics, Molecular Genetics

> Horizon Molecular Medicine

> 4855 Peachtree Industrial Blvd.

> Norcross, GA 30092

>

> Fax

>

> As for you symptoms, I have IBS, dizziness and light-headedness,

muscle pain and weakness, joint pain, persistent general fatigue,

anxiety and panic attacks, head pressure, cognitive problems...

>

> I was diagnosed about a year ago with a complex I defect by a

muscle biopsy, but have had the problem for 5 years now which was age

45 for me too. Welcome.

> Lea

>

>

> recently diagnosed mito dz

>

>

>

>

> I am 45 years old and was recently diagnosed with

mitochondrial

> disease by muscle biopsy. I have myopathy as well as autonomic

> symptoms including nausea and anorexia, bouts of diarrhea, some

> dizziness and light-headedness, and occasional orthostatic

> hypotension. I currently do not have a physician who is

specialized

> or very familar with treatment of this disease, and am in great

need

> of finding a top specialist in this area. I live in the south

but I

> would be willing to go anywhere in the U.S. Does anyone know

of a

> physician who has strong clinical skills and who also is on the

> cutting edge of the latest treatments?

> I would also be interested in hearing from any one with

similar

> problems, anything you might have done to alleviate or help

with

> these symptoms, and if or how much your disease has progressed

over

> time.

>

>

>

>

>

>

>

>

>

> 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]

I don't need a chair yet, but I know that sitting when doing things

instead of standing helps a lot, or leaning against a wall instead of

standing free.

You might want to look into getting a disabled person's placard, if

you haven't got one already. I am " mildly " disabled, but if I get

fatigued, I am unable to drive due to vision symptoms, so I've had a

placard for years.

Take care,

RH

>

>

> It took me a long time to be able to listen to my body. For me,

frequent

> rest periods of about 15 minutes helps more than 2 hours after

pushing

> myself.

>

> Learning to sit while cooking or doing dishes and using a scooter

while

> shopping, helped the most. I now use a power chair outside the

house and

> walk some in the house.

>

> Just a couple words of caution. Many of us have found that starting

on large

> doses of supplements or meds give us trouble. I had to start at a

low dose

> and build up slowly. The other is that some research on Parkinson's

has

> shown that CoQ10 might be worthless until the dosage is increased

to a much

> higher level than thought necessary. The research indicated

improvement at

> the 1000 to 1200 mg. range. My MDA doctor has me on 240 mg. four

times a day

> - this is the Q-gel which is more bio-available so actually like a

bigger

> dose. It wasn't until I got to this level that I saw improvement.

Of course,

> some, and maybe you do well on a much lower dose.

>

> laurie

>

> > From: " "

> > Reply-To:

> > Date: Sat, 15 Jan 2005 23:19:26 -0600

> > To: >

> > Subject: Re: recently diagnosed mito dz

> >

> >

> > Thanks for your rapid response!

> > I have read that there is tremendous variability among different

individuals,

> > even among family members. I have found a good bit of

variability in

> > symptoms/physical findings even with myself with

different " flares " ( I have

> > been overtly symptomatic for 7 months, but retrospectively,

probably about 3-4

> > years). Its lack of predictability is one thing I find extremely

frustrating.

> > I am hoping that, with time, I will learn my tolerance for

different

> > activities.

> > I have only been diagnosed in the last month, and have just

started the

> > vitamin cocktail. I hope that it helps.

> > Thanks for the welcome!

> >

> > recently diagnosed mito dz

> >>

> >>

> >>

> >> I am 45 years old and was recently diagnosed with mitochondrial

> >> disease by muscle biopsy. I have myopathy as well as autonomic

> >> symptoms including nausea and anorexia, bouts of diarrhea, some

> >> dizziness and light-headedness, and occasional orthostatic

> >> hypotension. I currently do not have a physician who is

specialized

> >> or very familar with treatment of this disease, and am in great

need

> >> of finding a top specialist in this area. I live in the south

but I

> >> would be willing to go anywhere in the U.S. Does anyone know of

a

> >> physician who has strong clinical skills and who also is on the

> >> cutting edge of the latest treatments?

> >> I would also be interested in hearing from any one with similar

> >> problems, anything you might have done to alleviate or help with

> >> these symptoms, and if or how much your disease has progressed

over

> >> time.

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> 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]

To md1321 can you please email me privetly as I may have some advice might be

long thank you.

Donna

---- md1321jht JHTMD@...> wrote:

>

>

>

> I am 45 years old and was recently diagnosed with mitochondrial

> disease by muscle biopsy. I have myopathy as well as autonomic

> symptoms including nausea and anorexia, bouts of diarrhea, some

> dizziness and light-headedness, and occasional orthostatic

> hypotension. I currently do not have a physician who is specialized

> or very familar with treatment of this disease, and am in great need

> of finding a top specialist in this area. I live in the south but I

> would be willing to go anywhere in the U.S. Does anyone know of a

> physician who has strong clinical skills and who also is on the

> cutting edge of the latest treatments?

> I would also be interested in hearing from any one with similar

> problems, anything you might have done to alleviate or help with

> these symptoms, and if or how much your disease has progressed over

> time.

>

>

>

>

>

>

>

>

>

>

> 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]

To md1321 can you please email me privetly as I may have some advice might be

long thank you.

Donna

---- md1321jht JHTMD@...> wrote:

>

>

>

> I am 45 years old and was recently diagnosed with mitochondrial

> disease by muscle biopsy. I have myopathy as well as autonomic

> symptoms including nausea and anorexia, bouts of diarrhea, some

> dizziness and light-headedness, and occasional orthostatic

> hypotension. I currently do not have a physician who is specialized

> or very familar with treatment of this disease, and am in great need

> of finding a top specialist in this area. I live in the south but I

> would be willing to go anywhere in the U.S. Does anyone know of a

> physician who has strong clinical skills and who also is on the

> cutting edge of the latest treatments?

> I would also be interested in hearing from any one with similar

> problems, anything you might have done to alleviate or help with

> these symptoms, and if or how much your disease has progressed over

> time.

>

>

>

>

>

>

>

>

>

>

> 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]

I sure second that RH!

laurie

>

> Reply-To:

> Date: Sun, 16 Jan 2005 17:35:24 -0000

> To:

> Subject: Re: recently diagnosed mito dz

>

>

> On a similar note, it is sometimes easy to say ALL of our various

> symptoms and maladies are due to mito, but my mito doc is very

> careful to explore other possibilities. I have high blood ammonia

> (when untreated), and my neuro insisted I go to a GI doctor before

> she treated me for it. The GI doctor confirmed that my liver and

> kidneys were okay, and treated me for it. It still may be from

> my " mito disease " , but it was important to rule out other, more

> common causes.

>

> I hope you are able to find a knowledgeable mito doc soon to address

> your issues...

>

> Take care,

> RH

>

>

>> Welcome to the group. I hope we can provide you with friendship and

> support.

>>

>> I think that there is so much variation in mito, that what seems

> like

>> similar symptoms might have a different response to treatment or

> inability

>> to tolerate it and the progression might be at one end of the

> spectrum to

>> the other.

>>

>> I think the mito cocktail has helped to slow my progression. This

> is not to

>> say that there has been no progression. Mine has increased with

> age. Since

>> the aging process is caused by damage to the mitochondria, it would

> seem

>> natural to have this happen - kind of like a double dose of aging.

>>

>> laurie

>>

>>> From: " md1321jht "

>>> Reply-To:

>>> Date: Sun, 16 Jan 2005 02:33:04 -0000

>>> To:

>>> Subject: recently diagnosed mito dz

>>>

>>>

>>>

>>> I am 45 years old and was recently diagnosed with mitochondrial

>>> disease by muscle biopsy. I have myopathy as well as autonomic

>>> symptoms including nausea and anorexia, bouts of diarrhea, some

>>> dizziness and light-headedness, and occasional orthostatic

>>> hypotension. I currently do not have a physician who is

> specialized

>>> or very familar with treatment of this disease, and am in great

> need

>>> of finding a top specialist in this area. I live in the south

> but I

>>> would be willing to go anywhere in the U.S. Does anyone know of a

>>> physician who has strong clinical skills and who also is on the

>>> cutting edge of the latest treatments?

>>> I would also be interested in hearing from any one with similar

>>> problems, anything you might have done to alleviate or help with

>>> these symptoms, and if or how much your disease has progressed

> over

>>> time.

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>> 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]

There are the MDA docs who are adult neurologist who are treating many more

mito patients than a few years ago.

laurie

>

> Reply-To:

> Date: Sun, 16 Jan 2005 17:38:08 -0000

> To:

> Subject: Re: recently diagnosed mito dz

>

>

> I wonder if there are any mito docs who primarily see adults, as kids

> who are affected tend to be more severely affected, and need more

> urgent and frequent care...

>

> I think (guys, correct me if I'm wrong) the best we can do is see a

> mito doc who *does* see adults, some won't see adults at all, that

> is, unless the patient had mito disease as a kid as well and was

> being followed up...

>

> Take care,

> RH

>

>

>>

>> Thanks for your rapid response and the welcome!

>>

>> I live in Mississippi, but Atlanta is easily accessible by a short

> plane flight. Is mit. dz. Dr. Shoffner's primary area of interest

> and practice? Does he see predominantly adults? It sounds as though

> you have been extremely pleased with your care from him. I am

> looking for someone who can give me some guidance (if he can) as to

> what I might expect based on the course of my disease so far, and

> provide recommendations as to lifestyle changes that might help

> symptoms or slow the progression of disease. I also hope to find

> someone very familiar with the treatment of symptoms as the last 6

> weeks have been pretty miserable for me. It sounds as though we have

> many similar symptoms. I forgot to mention in my original e-mail

> myalgias and incredible fatigue-2 of my more debilitating problems.

> I also have a severe cold intolerance (thank goodness I live in the

> south), and Renauyd's.

>> Thanks again!

>>

>>

>> -- Original Message -----

>> From: Lea

>> To:

>> Sent: Saturday, January 15, 2005 9:48 PM

>> Subject: Re: recently diagnosed mito dz

>>

>>

>>

>> Hello,

>>

>> If you are near Atlanta, Dr. Shoffner is the guy. He will

> need a recommendation and clinical history from your regular doctor.

> His contact information is:

>> Dr. M. Shoffner, MD

>> Neurology, Biochemical Genetics, Molecular Genetics

>> Horizon Molecular Medicine

>> 4855 Peachtree Industrial Blvd.

>> Norcross, GA 30092

>>

>> Fax

>>

>> As for you symptoms, I have IBS, dizziness and light-headedness,

> muscle pain and weakness, joint pain, persistent general fatigue,

> anxiety and panic attacks, head pressure, cognitive problems...

>>

>> I was diagnosed about a year ago with a complex I defect by a

> muscle biopsy, but have had the problem for 5 years now which was age

> 45 for me too. Welcome.

>> Lea

>>

>>

>> recently diagnosed mito dz

>>

>>

>>

>>

>> I am 45 years old and was recently diagnosed with

> mitochondrial

>> disease by muscle biopsy. I have myopathy as well as autonomic

>> symptoms including nausea and anorexia, bouts of diarrhea, some

>> dizziness and light-headedness, and occasional orthostatic

>> hypotension. I currently do not have a physician who is

> specialized

>> or very familar with treatment of this disease, and am in great

> need

>> of finding a top specialist in this area. I live in the south

> but I

>> would be willing to go anywhere in the U.S. Does anyone know

> of a

>> physician who has strong clinical skills and who also is on the

>> cutting edge of the latest treatments?

>> I would also be interested in hearing from any one with

> similar

>> problems, anything you might have done to alleviate or help

> with

>> these symptoms, and if or how much your disease has progressed

> over

>> time.

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> 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]

There are the MDA docs who are adult neurologist who are treating many more

mito patients than a few years ago.

laurie

>

> Reply-To:

> Date: Sun, 16 Jan 2005 17:38:08 -0000

> To:

> Subject: Re: recently diagnosed mito dz

>

>

> I wonder if there are any mito docs who primarily see adults, as kids

> who are affected tend to be more severely affected, and need more

> urgent and frequent care...

>

> I think (guys, correct me if I'm wrong) the best we can do is see a

> mito doc who *does* see adults, some won't see adults at all, that

> is, unless the patient had mito disease as a kid as well and was

> being followed up...

>

> Take care,

> RH

>

>

>>

>> Thanks for your rapid response and the welcome!

>>

>> I live in Mississippi, but Atlanta is easily accessible by a short

> plane flight. Is mit. dz. Dr. Shoffner's primary area of interest

> and practice? Does he see predominantly adults? It sounds as though

> you have been extremely pleased with your care from him. I am

> looking for someone who can give me some guidance (if he can) as to

> what I might expect based on the course of my disease so far, and

> provide recommendations as to lifestyle changes that might help

> symptoms or slow the progression of disease. I also hope to find

> someone very familiar with the treatment of symptoms as the last 6

> weeks have been pretty miserable for me. It sounds as though we have

> many similar symptoms. I forgot to mention in my original e-mail

> myalgias and incredible fatigue-2 of my more debilitating problems.

> I also have a severe cold intolerance (thank goodness I live in the

> south), and Renauyd's.

>> Thanks again!

>>

>>

>> -- Original Message -----

>> From: Lea

>> To:

>> Sent: Saturday, January 15, 2005 9:48 PM

>> Subject: Re: recently diagnosed mito dz

>>

>>

>>

>> Hello,

>>

>> If you are near Atlanta, Dr. Shoffner is the guy. He will

> need a recommendation and clinical history from your regular doctor.

> His contact information is:

>> Dr. M. Shoffner, MD

>> Neurology, Biochemical Genetics, Molecular Genetics

>> Horizon Molecular Medicine

>> 4855 Peachtree Industrial Blvd.

>> Norcross, GA 30092

>>

>> Fax

>>

>> As for you symptoms, I have IBS, dizziness and light-headedness,

> muscle pain and weakness, joint pain, persistent general fatigue,

> anxiety and panic attacks, head pressure, cognitive problems...

>>

>> I was diagnosed about a year ago with a complex I defect by a

> muscle biopsy, but have had the problem for 5 years now which was age

> 45 for me too. Welcome.

>> Lea

>>

>>

>> recently diagnosed mito dz

>>

>>

>>

>>

>> I am 45 years old and was recently diagnosed with

> mitochondrial

>> disease by muscle biopsy. I have myopathy as well as autonomic

>> symptoms including nausea and anorexia, bouts of diarrhea, some

>> dizziness and light-headedness, and occasional orthostatic

>> hypotension. I currently do not have a physician who is

> specialized

>> or very familar with treatment of this disease, and am in great

> need

>> of finding a top specialist in this area. I live in the south

> but I

>> would be willing to go anywhere in the U.S. Does anyone know

> of a

>> physician who has strong clinical skills and who also is on the

>> cutting edge of the latest treatments?

>> I would also be interested in hearing from any one with

> similar

>> problems, anything you might have done to alleviate or help

> with

>> these symptoms, and if or how much your disease has progressed

> over

>> time.

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> 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]

LAURIE,

Thank both you and R.H. for your responses. At this point, I would be happy

just to find a Doc. who is knowledgable and helpful. I did hope to find someone

with considerable experience with adults, because it seems as though there would

be some differences in problems encountered by the 2 population groups.

Thanks,

recently diagnosed mito dz

>>

>>

>>

>>

>> I am 45 years old and was recently diagnosed with

> mitochondrial

>> disease by muscle biopsy. I have myopathy as well as autonomic

>> symptoms including nausea and anorexia, bouts of diarrhea, some

>> dizziness and light-headedness, and occasional orthostatic

>> hypotension. I currently do not have a physician who is

> specialized

>> or very familar with treatment of this disease, and am in great

> need

>> of finding a top specialist in this area. I live in the south

> but I

>> would be willing to go anywhere in the U.S. Does anyone know

> of a

>> physician who has strong clinical skills and who also is on the

>> cutting edge of the latest treatments?

>> I would also be interested in hearing from any one with

> similar

>> problems, anything you might have done to alleviate or help

> with

>> these symptoms, and if or how much your disease has progressed

> over

>> time.

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> 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]

You're welcome

Maybe that is another word of wisdom we can pass on - finding a doc

who will listen to you and be willing to find out more is very

important. Many of us have gone to doctors who said we were " making

up symptoms " or " it's all in your head " .

Good luck finding a decent doctor, and you might want to start now to

put together copies of your medical records to bring or send.

Take care,

RH

> >>

> >> Thanks for your rapid response and the welcome!

> >>

> >> I live in Mississippi, but Atlanta is easily accessible by a

short

> > plane flight. Is mit. dz. Dr. Shoffner's primary area of

interest

> > and practice? Does he see predominantly adults? It sounds as

though

> > you have been extremely pleased with your care from him. I am

> > looking for someone who can give me some guidance (if he can)

as to

> > what I might expect based on the course of my disease so far,

and

> > provide recommendations as to lifestyle changes that might help

> > symptoms or slow the progression of disease. I also hope to

find

> > someone very familiar with the treatment of symptoms as the

last 6

> > weeks have been pretty miserable for me. It sounds as though

we have

> > many similar symptoms. I forgot to mention in my original e-

mail

> > myalgias and incredible fatigue-2 of my more debilitating

problems.

> > I also have a severe cold intolerance (thank goodness I live in

the

> > south), and Renauyd's.

> >> Thanks again!

> >>

> >>

> >> -- Original Message -----

> >> From: Lea

> >> To:

> >> Sent: Saturday, January 15, 2005 9:48 PM

> >> Subject: Re: recently diagnosed mito dz

> >>

> >>

> >>

> >> Hello,

> >>

> >> If you are near Atlanta, Dr. Shoffner is the guy. He will

> > need a recommendation and clinical history from your regular

doctor.

> > His contact information is:

> >> Dr. M. Shoffner, MD

> >> Neurology, Biochemical Genetics, Molecular Genetics

> >> Horizon Molecular Medicine

> >> 4855 Peachtree Industrial Blvd.

> >> Norcross, GA 30092

> >>

> >> Fax

> >>

> >> As for you symptoms, I have IBS, dizziness and light-

headedness,

> > muscle pain and weakness, joint pain, persistent general

fatigue,

> > anxiety and panic attacks, head pressure, cognitive problems...

> >>

> >> I was diagnosed about a year ago with a complex I defect by a

> > muscle biopsy, but have had the problem for 5 years now which

was age

> > 45 for me too. Welcome.

> >> Lea

> >>

> >>

> >> recently diagnosed mito dz

> >>

> >>

> >>

> >>

> >> I am 45 years old and was recently diagnosed with

> > mitochondrial

> >> disease by muscle biopsy. I have myopathy as well as autonomic

> >> symptoms including nausea and anorexia, bouts of diarrhea, some

> >> dizziness and light-headedness, and occasional orthostatic

> >> hypotension. I currently do not have a physician who is

> > specialized

> >> or very familar with treatment of this disease, and am in great

> > need

> >> of finding a top specialist in this area. I live in the south

> > but I

> >> would be willing to go anywhere in the U.S. Does anyone know

> > of a

> >> physician who has strong clinical skills and who also is on the

> >> cutting edge of the latest treatments?

> >> I would also be interested in hearing from any one with

> > similar

> >> problems, anything you might have done to alleviate or help

> > with

> >> these symptoms, and if or how much your disease has progressed

> > over

> >> time.

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> 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]

I was seeing a pediatric neuro at MDA and switched to an adult neuro for

just the same reason (I am an adult). Most of the mito experts are ped.

neuros and they often will say that they don't know in an adult. I mentioned

the MDA, because they are learning more about mito all of the time. Finding

a doc who is caring and willing to learn is another option. I have found

some like this, even in the speciality areas like cardiology.

Good luck in your search.

laurie

>

> Reply-To:

> Date: Sun, 16 Jan 2005 20:01:19 -0600

> To: >

> Subject: Re: recently diagnosed mito dz

>

> LAURIE,

>

> Thank both you and R.H. for your responses. At this point, I would be happy

> just to find a Doc. who is knowledgable and helpful. I did hope to find

> someone with considerable experience with adults, because it seems as though

> there would be some differences in problems encountered by the 2 population

> groups.

> Thanks,

>

>

> recently diagnosed mito dz

>>>

>>>

>>>

>>>

>>> I am 45 years old and was recently diagnosed with

>> mitochondrial

>>> disease by muscle biopsy. I have myopathy as well as autonomic

>>> symptoms including nausea and anorexia, bouts of diarrhea, some

>>> dizziness and light-headedness, and occasional orthostatic

>>> hypotension. I currently do not have a physician who is

>> specialized

>>> or very familar with treatment of this disease, and am in great

>> need

>>> of finding a top specialist in this area. I live in the south

>> but I

>>> would be willing to go anywhere in the U.S. Does anyone know

>> of a

>>> physician who has strong clinical skills and who also is on the

>>> cutting edge of the latest treatments?

>>> I would also be interested in hearing from any one with

>> similar

>>> problems, anything you might have done to alleviate or help

>> with

>>> these symptoms, and if or how much your disease has progressed

>> over

>>> time.

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>> 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.

>>>

>>>

>>>

>>>

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

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

>>>