Re: MDA clinics in Pennsylvania?

[Guest guest]

Pennsylvania is a pretty big state, so really geography will limit

where the patient goes (if they don't want to travel far). I and

several others on this list go to the town MDA clinic - the

doctor is very good there. She also sees patients in Philadelphia in

her private practice.

You might want to list what the nearest " big town " is to the

patient. If they are willing to travel, maybe a regional expert

would be better (anyone go to a " CPT deficiency expert " doctor?). I

had to go to Georgia (from NJ) to get my fresh muscle biopsy, have

had other tests in NYC, and am going to MA at the end of September.

Take care,

RH

> I know there are several of you in PA who use the MDA clinics

there, and

> that some clinics are better than others. I'm looking for a

recommendation

> for the better MDA clinics in PA for a CPT deficiency patient who

lives in

> PA. Anyone want to share opinions and advice on which are better?

This

> patient has a very complicated history and needs an expert---or at

least

> something closer to an expert than she has now.

>

> Thanks. Barbara

[Guest guest]

Thanks, RH. Much appreciated. I will pass on the town suggestion. Yes,

a regional expert would be better, but not sure she can travel much as she

is very ill. I will also give her several NY and New England names in case.

Those I have down pat, but more local names I don't always know. It makes

such a difference to these patients to connect with a doctor who knows

something about CPT and has some idea of how to manage and treat.

Cheers!

Barbara

> Re: MDA clinics in Pennsylvania?

>

> Pennsylvania is a pretty big state, so really geography will limit

> where the patient goes (if they don't want to travel far). I and

> several others on this list go to the town MDA clinic - the

> doctor is very good there. She also sees patients in Philadelphia in

> her private practice.

>

> You might want to list what the nearest " big town " is to the

> patient. If they are willing to travel, maybe a regional expert

> would be better (anyone go to a " CPT deficiency expert " doctor?). I

> had to go to Georgia (from NJ) to get my fresh muscle biopsy, have

> had other tests in NYC, and am going to MA at the end of September.

>

> Take care,

> RH

>

>

> > I know there are several of you in PA who use the MDA clinics

> there, and

> > that some clinics are better than others. I'm looking for a

> recommendation

> > for the better MDA clinics in PA for a CPT deficiency patient who

> lives in

> > PA. Anyone want to share opinions and advice on which are better?

> This

> > patient has a very complicated history and needs an expert---or at

> least

> > something closer to an expert than she has now.

> >

> > Thanks. Barbara

>

>

>

>

>

>

> 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 Barbara,

I have been to two MDA clinics in PA.

I saw Dr. Terry Heinman-Paterson at the ALS clinic in Philly and then

at the MDA clinic in town. I saw her for about 10 years. She has a good

reputation. She is aggressive and if you are willing she will try many

different treatment schemes. I had a problem with her attention to my

particular situation(she sees many patients MD and ALS). After many heart to

heart talks with her about my concerns and with little improvement I

switched to the MDA clinic at Hershey Medical Center.

I have seen Dr. for about 4 years now. My diagnosis is

Mitochondrial Myopathy. I am progressively getting weaker but I do not

require and truly intense treatment. In fact, Dr. has not prescribed

any treatment for me. Now I only see him as needed. The MDA clinic has

helped me with wheelchairs and other adaptive equipment.

If I had another option I would try it.

Dave

MDA clinics in Pennsylvania?

>I know there are several of you in PA who use the MDA clinics there, and

> that some clinics are better than others. I'm looking for a recommendation

> for the better MDA clinics in PA for a CPT deficiency patient who lives in

> PA. Anyone want to share opinions and advice on which are better? This

> patient has a very complicated history and needs an expert---or at least

> something closer to an expert than she has now.

>

> Thanks. Barbara

>

>

>

>

>

> 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]

Very helpful, Dave. This is the kind of information you get only from

patients. Thanks much. I will pass this along.

Take care,

Barbara

> Re: MDA clinics in Pennsylvania?

>

> Hi Barbara,

> I have been to two MDA clinics in PA.

> I saw Dr. Terry Heinman-Paterson at the ALS clinic in Philly and then

> at the MDA clinic in town. I saw her for about 10 years. She has a

good

> reputation. She is aggressive and if you are willing she will try many

> different treatment schemes. I had a problem with her attention to my

> particular situation(she sees many patients MD and ALS). After many heart

to

> heart talks with her about my concerns and with little improvement I

> switched to the MDA clinic at Hershey Medical Center.

> I have seen Dr. for about 4 years now. My diagnosis is

> Mitochondrial Myopathy. I am progressively getting weaker but I do not

> require and truly intense treatment. In fact, Dr. has not

prescribed

> any treatment for me. Now I only see him as needed. The MDA clinic has

> helped me with wheelchairs and other adaptive equipment.

> If I had another option I would try it.

> Dave

> MDA clinics in Pennsylvania?

>

>

> >I know there are several of you in PA who use the MDA clinics there, and

> > that some clinics are better than others. I'm looking for a

recommendation

> > for the better MDA clinics in PA for a CPT deficiency patient who lives

in

> > PA. Anyone want to share opinions and advice on which are better? This

> > patient has a very complicated history and needs an expert---or at least

> > something closer to an expert than she has now.

> >

> > Thanks. Barbara

> >

> >

> >

> >

> >

> > 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 will agree Dr. H-P is pretty aggressive (she is my doctor as well)

and is concerned about other issues than mito for the patient (which

is a positive thing for me). Appointments at the town MDA

clinic are scheduling months in advance, because it is a small clinic

and really only one doctor.

She had started me on CoQ10 and Carnitor, and keeps asking me if I'm

on it and I have to remind her I get bad side effects from each of

them. But she was the first one to give me a mito dx, and pressured

me to get a muscle biopsy, which was very important to me.

I would ask about getting on a waiting list, wherever you call. If

the person is very ill, perhaps a large medical center or university

hospital would be appropriate, just to get in the door to somewhere

that focuses on neuromuscular diseases.

I find the difficulty with the MDA clinics is that visits are so

infrequent, day-to-day issues are completely under my control, and I

adjust medications, diet, and lifestyle as need be. I didn't find

that the nurses were up on mitochondrial disease. My understanding

is that is *not* the case in Boston at NEMC metabolism clinic - both

the doctors and nurses know a lot about mito.

Take care,

RH

> Hi Barbara,

> I have been to two MDA clinics in PA.

> I saw Dr. Terry Heinman-Paterson at the ALS clinic in Philly

and then

> at the MDA clinic in town. I saw her for about 10 years. She

has a good

> reputation. She is aggressive and if you are willing she will try

many

> different treatment schemes. I had a problem with her attention to

my

> particular situation(she sees many patients MD and ALS). After many

heart to

> heart talks with her about my concerns and with little improvement

I

> switched to the MDA clinic at Hershey Medical Center.

> I have seen Dr. for about 4 years now. My diagnosis is

> Mitochondrial Myopathy. I am progressively getting weaker but I do

not

> require and truly intense treatment. In fact, Dr. has not

prescribed

> any treatment for me. Now I only see him as needed. The MDA clinic

has

> helped me with wheelchairs and other adaptive equipment.

> If I had another option I would try it.

> Dave

> MDA clinics in Pennsylvania?

>

>

> >I know there are several of you in PA who use the MDA clinics

there, and

> > that some clinics are better than others. I'm looking for a

recommendation

> > for the better MDA clinics in PA for a CPT deficiency patient who

lives in

> > PA. Anyone want to share opinions and advice on which are

better? This

> > patient has a very complicated history and needs an expert---or

at least

> > something closer to an expert than she has now.

> >

> > Thanks. Barbara

> >

> >

> >

> >

> >

> > 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]

Right, this is also what I hear about NEMC. Most places there seems to be a

significant waiting list. The patient does have doctors at present who are

trying to help her, but they have " lost " one muscle biopsy,

etc........unfortunately, we've all heard these stories before. It is so

crucial to get the right help. Hopefully we can help her do that.

Tks again.

B

> Re: MDA clinics in Pennsylvania?

>

> I will agree Dr. H-P is pretty aggressive (she is my doctor as well)

> and is concerned about other issues than mito for the patient (which

> is a positive thing for me). Appointments at the town MDA

> clinic are scheduling months in advance, because it is a small clinic

> and really only one doctor.

>

> She had started me on CoQ10 and Carnitor, and keeps asking me if I'm

> on it and I have to remind her I get bad side effects from each of

> them. But she was the first one to give me a mito dx, and pressured

> me to get a muscle biopsy, which was very important to me.

>

> I would ask about getting on a waiting list, wherever you call. If

> the person is very ill, perhaps a large medical center or university

> hospital would be appropriate, just to get in the door to somewhere

> that focuses on neuromuscular diseases.

>

> I find the difficulty with the MDA clinics is that visits are so

> infrequent, day-to-day issues are completely under my control, and I

> adjust medications, diet, and lifestyle as need be. I didn't find

> that the nurses were up on mitochondrial disease. My understanding

> is that is *not* the case in Boston at NEMC metabolism clinic - both

> the doctors and nurses know a lot about mito.

>

> Take care,

> RH

[Guest guest]

Barb,

My 20 year old son also sees Dr. at Hershey Med. What I

really like about Dr. is that he takes the time to answer your

questions and doesn't seem to rush out of the room. In fact, you

wouldn't even know that he has other patients to see because he gives

you all his focus when you are there.

My son also sees Dr. Podskalny at Hershey Med for movement problems

and seizures.

Just thought I'd add my 2 cents worth.

Kim