Re: Help: MDA Advice

[Guest guest]

Dear Mitoldies,

I hope there are members who can answer my question.

I have been treated at the Palo Alto Medical Foundation and Stanford

University since my diagnosis of MELAS five years ago. I have been pleased

with the

service I have received. The only negative is the location, a three hour

drive if the traffic is moving.

There is a MDA Clinic at the University of California, , in Sacrament

about half the distance from my home. I attended the mandatory MDA

orientation this past week. I was terribly disappointed as the focus was on

fundraising and volunteering. But this was the MDA office not the muscular

dystrophy

clinic. When I asked the name of the person in the clinic who specialized in

mitochondrial diseases they could not name the physician. The only answer I

received is that the clinic does see mitochondrial patients.

Is there anyone in the big black hole of cyberspace who has used the MDA

services at the University of California, , in Sacramento? If you have,

what do you think of their services? Is there anyone who specializes or is

particularly good with mitochondrial diseases?

As my condition takes a slow downhill slide, I really need care that is

easier to get to, but I do not feel like risking the quality of my care for the

expediency of a shorter travel time. Any comments are greatly appreciated.

Thank you.

a

[Guest guest]

HI a,

I live near Philadelphia so don't have a wide range of experience with the

Northern CA area, but I did see Dr Greg Enns once at Stanford a few years ago.

He is a metabolic geneticist and does quite a bit of new research with mito

disease which is pretty exciting b/c the research he is doing has already

benefited me in several ways. This research may actually have an impact on

general patient care for mito patients within a few years.

I also see a mito doctor in Boston who has much more clinical experience

with mito patients than Dr Enns does. Dr Enns strikes me as more of a

researcher

who also sees patients in his clinical practice. He is still on a learning

curve with mito, but is very friendly, kind and also has a genuine interest in

mito patients. He is actually starting a 3 year research scholarship in July

and is limiting his genetics clinical practice soley to metabolic and

mitochondrial patients. I think he would be worth seeing even though he isn't

an

MDA doctor. I have been very impressed with my care from him thus far.

Malisa

In a message dated 4/9/2006 1:03:13 P.M. Eastern Standard Time,

pattengale@... writes:

Dear Mitoldies,

I hope there are members who can answer my question.

I have been treated at the Palo Alto Medical Foundation and Stanford

University since my diagnosis of MELAS five years ago. I have been pleased

with the

service I have received. The only negative is the location, a three hour

drive if the traffic is moving.

There is a MDA Clinic at the University of California, , in Sacrament

about half the distance from my home. I attended the mandatory MDA

orientation this past week. I was terribly disappointed as the focus was

on

fundraising and volunteering. But this was the MDA office not the muscular

dystrophy

clinic. When I asked the name of the person in the clinic who specialized

in

mitochondrial diseases they could not name the physician. The only answer

I

received is that the clinic does see mitochondrial patients.

Is there anyone in the big black hole of cyberspace who has used the MDA

services at the University of California, , in Sacramento? If you

have,

what do you think of their services? Is there anyone who specializes or is

particularly good with mitochondrial diseases?

As my condition takes a slow downhill slide, I really need care that is

easier to get to, but I do not feel like risking the quality of my care for

the

expediency of a shorter travel time. Any comments are greatly appreciated.

Thank you.

a

[Non-text portions of this message have been removed]

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, a-

I live in and have been fighting to get into the MDA clinic since

November. I finally have an appointment for next week. The reason they

can¹t give you the name of a mitochondrial specialist is that there isn¹t

one- either through the clinic or through UCD Medical Center. The closest

thing UC offers is a neurologist who specializes in Myasthenia Gravis.

He HAS NOT been helpful in diagnosing me or in helping me to find someone

who can. Every mito contact I¹ve made has been on my own and/or with the

help of the information provided by the good folks on this list.

The doctor who heads UCD¹s MDA clinic is a rehab specialist. I¹ve

experienced the same fundraising/volunteering push from the Sacramento MDA

office you have, and have been pretty put off by it- I¹m not adverse to

participating in either, but right now my highest priority is coming to

terms with what¹s happening to me, getting as full a diagnosis as possible

and finding someone who can provide knowledgeable treatment, the last two

of which have been exceedingly difficult to date, which greatly increases

the difficulty of the first.

Do you see Dr. Enns? I¹m in the process of getting a referral to his office

now. Finding him (with help from Dr. Boles in LA) was a huge relief, and

Palo Alto seems close at this point; because at first it seemed like the

only California mito docs who see adults were in LA and San Diego. I have

two young children and the expense and time connected with having a doctor

400 miles away is daunting. I know many people on this list deal with even

greater distances and it sounds really tough.

I¹ll let you know how my appointment with the MDA clinic goes next week- if

we¹re close enough, maybe there could be carpool opportunities to Stanford?

Take care,

Kathleen

[Guest guest]

I go to a MDA clinic here in AZ and when I went ,the doc there pulled me out

of the MDA clinic and put me in his private clinic because he said I dont

have MD. there is one other woman also that goes there that he did the same

thing too that has mito...I was under the impression that the MDA covered

mito..but it seems you got the same thing.

[Guest guest]

I sounds like these docs need to go to the MDA website. Besides, how on

earth could Mattie Stapanak (sp) been the MDA sponsor for multiple years

when he had mito, if mito wasn't a form of MD. I would ask them both of

those questions. That really seems wild since MDA's corporate office is

in AZ.

MitomomX3@... wrote:

>I go to a MDA clinic here in AZ and when I went ,the doc there pulled me out

>of the MDA clinic and put me in his private clinic because he said I dont

>have MD. there is one other woman also that goes there that he did the same

>thing too that has mito...I was under the impression that the MDA covered

>mito..but it seems you got the same thing.

>

>

>

>

[Guest guest]

Malisa

May I ask, who (and what hospital) is your mito doc with clinical experience, in

Boston?

Steve D.

Re: Re: Help: MDA Advice

HI a,

I live near Philadelphia so don't have a wide range of experience with the

Northern CA area, but I did see Dr Greg Enns once at Stanford a few years

ago.

He is a metabolic geneticist and does quite a bit of new research with mito

disease which is pretty exciting b/c the research he is doing has already

benefited me in several ways. This research may actually have an impact on

general patient care for mito patients within a few years.

I also see a mito doctor in Boston who has much more clinical experience

with mito patients than Dr Enns does. Dr Enns strikes me as more of a

researcher

who also sees patients in his clinical practice. He is still on a learning

curve with mito, but is very friendly, kind and also has a genuine interest

in

mito patients. He is actually starting a 3 year research scholarship in July

and is limiting his genetics clinical practice soley to metabolic and

mitochondrial patients. I think he would be worth seeing even though he isn't

an

MDA doctor. I have been very impressed with my care from him thus far.

Malisa

[Guest guest]

Hi Steve,

I see Dr Korson at NEMC.

Malisa

Re: Re: Help: MDA Advice

Malisa

May I ask, who (and what hospital) is your mito doc with clinical experience, in

Boston?

Steve D.

Re: Re: Help: MDA Advice

HI a,

I live near Philadelphia so don't have a wide range of experience with the

Northern CA area, but I did see Dr Greg Enns once at Stanford a few years

ago.

He is a metabolic geneticist and does quite a bit of new research with mito

disease which is pretty exciting b/c the research he is doing has already

benefited me in several ways. This research may actually have an impact on

general patient care for mito patients within a few years.

I also see a mito doctor in Boston who has much more clinical experience

with mito patients than Dr Enns does. Dr Enns strikes me as more of a

researcher

who also sees patients in his clinical practice. He is still on a learning

curve with mito, but is very friendly, kind and also has a genuine interest

in

mito patients. He is actually starting a 3 year research scholarship in July

and is limiting his genetics clinical practice soley to metabolic and

mitochondrial patients. I think he would be worth seeing even though he isn't

an

MDA doctor. I have been very impressed with my care from him thus far.

Malisa