How many people are in the Boston area

[Guest guest]

Hi,

I was just wondering who on this list might be from the Boston area

and if there is anywhere that I can check out resources for the Boston

area?

Thanks,

Adam

[Guest guest]

What do you mean by resources, medical, or other (are you thinking of

going to a doctor there, or moving there)?

I believe there are a bunch of us who *go* to Boston to see doctors,

but not sure how many live near there (it's 5 hours away for me).

Take care,

RH

>

> Hi,

>

> I was just wondering who on this list might be from the Boston area

> and if there is anywhere that I can check out resources for the

Boston

> area?

>

> Thanks,

> Adam

>

[Guest guest]

Hi RH,

I was just wondering if anyone in the Boston area uses any local

resources, such as mito specialists, other specialists, primary cares,

any support organizations etc. I live in the Boston area.

RH, since you live so far away, how does that work? Do you have to

see specialists in your area and how do they coordinate with the mito

specialists here. Do you belong to any local mito group or anything

like that?

Thanks,

Adam

> >

> > Hi,

> >

> > I was just wondering who on this list might be from the Boston area

> > and if there is anywhere that I can check out resources for the

> Boston

> > area?

> >

> > Thanks,

> > Adam

> >

>

[Guest guest]

Okay Adam, your answers in line

> > >

> > > Hi,

> > >

> > > I was just wondering who on this list might be from the Boston

area

> > > and if there is anywhere that I can check out resources for the

> > Boston

> > > area?

> > >

> > > Thanks,

> > > Adam

> > >

> >

>

[Guest guest]

I have only had my first appointment with a Boston mito doc. She

was Dr. Sims at MGH. I was very impressed with her depth of

knowledge. At the same time, since I haven't been officially

diagnosed yet, I really wanted to make sure that she got the thumbs

up from other mito patients. If you do a search on this group's

site for " boston docs " you will probably find people's responses to

me. It seemed like more people see Korson or his NEMC crew but that

could just be who was checking into the group the week I asked. One

or two people had seen both docs and described Sims as being more

neurologically oriented and Korson as being more metabolically

oriented.

I happened to speak with Dr. DiMauro (NYC) on the phone last week

when I had questions about biopsy issues. In the course of our

discussion, he said that he consulted regularly with Dr. Sims and he

seemed to think highly of her. He said I was in good hands.

As for primary care docs, one idea is that if/when you find a mito

doc who you like, you might try asking that doc for a referral to a

primary care doc who s/he works with. By that I mean a doctor who

has a patient with mito and whom the specialist has already educated

about the disease or with whom s/he coordinates well. Just a

thought.

Don't know if your symptoms are such that you need personal care

attendants (PCAs) or home help. In Boston, you can get PCAs through

the Boston Center for Independent Living. If you want to go that

route, you might want to drop me a note first since there are

some...well...issues with the PCA program you might want to know

about ahead of time. But the program has made my life livable since

my mobility is so limited. I can't imagine where I'd be without

it. MassRehab has a homemaker program with less strict criteria for

services but they offer fewer hours/week of help. I didn't get good

services from them but a friend of mine had a great experience with

them.

I haven't checked out support groups. I like the anonymity of this

online thing.

Take care,

Shayna

> > > >

> > > > Hi,

> > > >

> > > > I was just wondering who on this list might be from the

Boston

> area

> > > > and if there is anywhere that I can check out resources for

the

> > > Boston

> > > > area?

> > > >

> > > > Thanks,

> > > > Adam

> > > >

> > >

> >

>

[Guest guest]

90 minutes to Boston, for me, from Outer Cape Cod. I see some docs at MGH.

Steve D.

> Date: Tue, 18 Oct 2005 15:04:59 -0000

>

> Subject: How many people are in the Boston area

>

> Hi,

>

> I was just wondering who on this list might be from the Boston area

> and if there is anywhere that I can check out resources for the Boston

> area?

>

> Thanks,

> Adam

[Guest guest]

Hi Steve,

Are you off the mainland cape? Do you see Dr Simms for the mito? Are

there other docs there that you use? How long have you been their

patient and how satisfied have you been with how you have been handled?

Thanks,

Adam

>

> 90 minutes to Boston, for me, from Outer Cape Cod. I see some docs

at MGH.

> Steve D.

>

> > Date: Tue, 18 Oct 2005 15:04:59 -0000

> > From: " adamm4321 "

> > Subject: How many people are in the Boston area

> >

> > Hi,

> >

> > I was just wondering who on this list might be from the Boston area

> > and if there is anywhere that I can check out resources for the Boston

> > area?

> >

> > Thanks,

> > Adam

>

[Guest guest]

\I am 65 miles away from Boston area. All my Doctors are at Mass

General.....my name isTrish Rodrigues.....the doctors are all great. Write

to me if you like.....trishrod1968@....

How many people are in the Boston area

> >

> > Hi,

> >

> > I was just wondering who on this list might be from the Boston area

> > and if there is anywhere that I can check out resources for the Boston

> > area?

> >

> > Thanks,

> > Adam

>

>

>

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