Looking for a new physician

[Guest guest]

Our 28 year old daughter was recently diagnosed with mito

chondria disease. We are in desparate need of finding a new primary

care physician in the Cincinnati, Ohio, area who will work with us

and has an understanding of mitochondria disease. Please resond if

you can help. Thanks!

[Guest guest]

Chuck and Kathie

I can't help with the doctor, but want to welcome you to the list. The UMDF

has a list of some of the doctors who treat mito. They may be able to help

you, or someone who lives in your area with mito. The MDA clinics are good

at seeing mito patients (most of the time) and might have a list of doctors

in the area who will work with you. You may never find a PCP who knows about

mito, but finding one who will work with your mito doc and is open to

learning is probably the next best. That is what I have.

laurie

>

> Reply-To:

> Date: Mon, 05 Jul 2004 16:22:03 -0000

> To:

> Subject: Looking for a new physician

>

> Our 28 year old daughter was recently diagnosed with mito

> chondria disease. We are in desparate need of finding a new primary

> care physician in the Cincinnati, Ohio, area who will work with us

> and has an understanding of mitochondria disease. Please resond if

> you can help. Thanks!

>

>

>

>

> 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]

Yes, same as Lauried, my PCP really doesn't know a thing about mito,

and not even my local neurologist. But both of them are caring and

willing to let me see the mito specialist (at the nearest MDA clinic,

40 miles away) as needed.

Mito is quite esoteric as diseases go, so even finding a PCP who

knows something about neuromuscular diseases at all would be

impressive.

Take care,

RH

> Chuck and Kathie

>

> I can't help with the doctor, but want to welcome you to the list.

The UMDF

> has a list of some of the doctors who treat mito. They may be able

to help

> you, or someone who lives in your area with mito. The MDA clinics

are good

> at seeing mito patients (most of the time) and might have a list of

doctors

> in the area who will work with you. You may never find a PCP who

knows about

> mito, but finding one who will work with your mito doc and is open

to

> learning is probably the next best. That is what I have.

>

> laurie

>

> > From: " chuckathie45231 "

> > Reply-To:

> > Date: Mon, 05 Jul 2004 16:22:03 -0000

> > To:

> > Subject: Looking for a new physician

> >

> > Our 28 year old daughter was recently diagnosed with mito

> > chondria disease. We are in desparate need of finding a new

primary

> > care physician in the Cincinnati, Ohio, area who will work with us

> > and has an understanding of mitochondria disease. Please resond

if

> > you can help. Thanks!

> >

> >

> >

> >

> > 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]

RH

Just finding a PCP who wasn't afraid to take me as a patient once I told

them about the mito was a long process.

laurie

>

> Reply-To:

> Date: Mon, 05 Jul 2004 21:09:32 -0000

> To:

> Subject: Re: Looking for a new physician

>

> Yes, same as Lauried, my PCP really doesn't know a thing about mito,

> and not even my local neurologist. But both of them are caring and

> willing to let me see the mito specialist (at the nearest MDA clinic,

> 40 miles away) as needed.

>

> Mito is quite esoteric as diseases go, so even finding a PCP who

> knows something about neuromuscular diseases at all would be

> impressive.

>

> Take care,

> RH

>

>

>

>

>> Chuck and Kathie

>>

>> I can't help with the doctor, but want to welcome you to the list.

> The UMDF

>> has a list of some of the doctors who treat mito. They may be able

> to help

>> you, or someone who lives in your area with mito. The MDA clinics

> are good

>> at seeing mito patients (most of the time) and might have a list of

> doctors

>> in the area who will work with you. You may never find a PCP who

> knows about

>> mito, but finding one who will work with your mito doc and is open

> to

>> learning is probably the next best. That is what I have.

>>

>> laurie

>>

>>> From: " chuckathie45231 "

>>> Reply-To:

>>> Date: Mon, 05 Jul 2004 16:22:03 -0000

>>> To:

>>> Subject: Looking for a new physician

>>>

>>> Our 28 year old daughter was recently diagnosed with mito

>>> chondria disease. We are in desparate need of finding a new

> primary

>>> care physician in the Cincinnati, Ohio, area who will work with us

>>> and has an understanding of mitochondria disease. Please resond

> if

>>> you can help. Thanks!

>>>

>>>

>>>

>>>

>>> 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]

YES!

> RH

>

> Just finding a PCP who wasn't afraid to take me as a patient once I told

> them about the mito was a long process.

>

> laurie

[Guest guest]

When I was diagnosed by a " mito " doctor who is actually a pediatrician and

internal medicine specialist. He is 2 hours away and was called by my

sisters doctors when someone suggested him. I went searching for a local

doctor here 2 hours away who could manage my everyday needs. You need to

find someone who does not scoff at having to go to the other doctor for

advice and who has an open mind.

I had a doctor who I had been seeing for 5 years and really liked but when I

brought the idea of working with this other doctor to him he refused. (Last

year he even refused to xray my son's stomach when we went there because

they are open late--said it was all in his head. Turns out he was very

constipated-gp said he could have gotten very, very sick..All turns out it

is melas)

Back then is when I went searching and interviewed 3 other doctors before I

found my current gp who is very open minded and willing to learn and also

to say when she does not know enough about something.

Janet Sample

Looking for a new physician

> > >

> > > Our 28 year old daughter was recently diagnosed with mito

> > > chondria disease. We are in desparate need of finding a new

> primary

> > > care physician in the Cincinnati, Ohio, area who will work with us

> > > and has an understanding of mitochondria disease. Please resond

> if

> > > you can help. Thanks!

> > >

> > >

> > >

> > >

> > > 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,

My husband Dewayne (DW) has seen Dr. Kissel at Ohio State in

Columbus....not too far from you all. He is the one who took one look at DW and

asked if we knew anyone in Texas.....he sent us there to Dr. Haller who did

another muscle biopsy as well as a skin biopsy. He had a frozen muscle biopsy

done at the University of KY and that was useless....They were of very little

help. We go to an excellent neurologist in Lexington who sent us to Dr. Kissel

in the first place. He does the primary care for DW. If you need more info,

just ask. Best of luck.

Lynda R.

Looking for a new physician

Our 28 year old daughter was recently diagnosed with mito

chondria disease. We are in desparate need of finding a new primary

care physician in the Cincinnati, Ohio, area who will work with us

and has an understanding of mitochondria disease. Please resond if

you can help. Thanks!

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 am lucky, before I was with a doctor who was nice, but *really*

busy. Waited for literally hours, and they never even had an open

room to let me lay down.

When I started seeing this new doc, I noticed she was busy, but her

office only schedules appointments every 20 minutes, not every 5

minutes like the other doctor.

I think it helps that my doc had previously done work in rural Peru

and Puerto Rico, so she knows that it doesn't matters what a patient

has, they are still people.

Take care,

RH

> YES!

>

>

>

> > RH

> >

> > Just finding a PCP who wasn't afraid to take me as a patient once

I told

> > them about the mito was a long process.

> >

> > laurie

[Guest guest]

every 5 minutes?! my word! how stupid is that?!

> I am lucky, before I was with a doctor who was nice, but *really*

> busy. Waited for literally hours, and they never even had an open

> room to let me lay down.

>

> When I started seeing this new doc, I noticed she was busy, but her

> office only schedules appointments every 20 minutes, not every 5

> minutes like the other doctor.

>

> I think it helps that my doc had previously done work in rural Peru

> and Puerto Rico, so she knows that it doesn't matters what a patient

> has, they are still people.

>

> Take care,

> RH

>