Re: MD coded for approval?

[Guest guest]

Hi Steve,

I guess I used the wrong word when I used the word “code.” A better way to

say it would be that MD is a disease recognized by SS as a disability

related disease. This is something that they are familiar with – not Mito

but Muscular Dystrophy. There are over 40 diseases under the umbrella of

Muscular Dystrophy but the common term for SS is Muscular Dystrophy.

It’s interesting that you called Warwick for your MDA health service

coordinator. My first visit to an MDA Clinic was from that very same

office. I am a former resident of RI. The coordinator must be present

because the MDA pays for all appointments. Usually, they meet you and bring

you in to see the neurologist. Sometimes they stay and sometimes they leave

but they are your liaison between the doctor and the MDA who provides the

services. If the doctor prescribes equipment, therapy or follow up

appointments – this coordinator is there to make sure it takes place. The

neurologists who are seen in the MDA Clinics usually have private offices

and only go to the clinic on assigned days. They handle more than muscular

dystrophy cases. Most of them are pretty uninformed when it comes to Mito

but because you have the diagnosis – you still qualify for the programs the

MDA offers. It’s really worth it to have them as part of your team.

You need to call the coordinator back and get an appointment if you want to

include them in your team. Sometimes, it takes months to get in and don’t

expect wonderful medical treatment. If you’re like most of us, you’ll find

that you are training again but these are the professionals who deal with

muscular dystrophies every day. Trust me when I say that this is a good

idea though.

Alice

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[Guest guest]

It took me over two years of going to a MDA clinic to be " covered by

MDA " . Since after that I had had a muscle biopsy that showed mito,

my son was covered after his second visit (about six months).

They sent us each a packet that said essentially " Welcome to the

MDA! " . This is different than just going to appointments there.

I never had to fill out an " application " to join MDA. I was however

registered when I first visited a MDA clinic, but I was told I

couldn't do things like use the " loaner closet " or go to camp (well,

my son anyway) unless actually " approved " .

Also, the MDA clinic is essentially a " day " and a " place " being

coordinated with MDA services. The town MDA sees " regular " MDA

patients on Mondays only, and I think sees ALS patients in a special

clinic on Thursdays. If I saw the neurologist outside of the MDA

clinic, it would not be included as a MDA visit. I might even have

to ask to get records communicated between the two places (my

doctor's " home office " and the MDA clinic) since they are 50 miles

apart.

Take care,

RH

> Hi Alice

>

> First question: can you tell me more, what you mean by " Muscular

Dystrophy

> is coded for approval " regarding disability claim?

>

> Many months ago I sent in a several page app to MDA, to get their

Quest mag

> and also to just be registered in case that would be of some help

down the

> road. I eventually received that mag, but no other notification of

> acceptance. So I called my regional (Warwick, RI, even though I'm

in MA)

> health services coordinator today, and learned the following: (1) I

am

> indeed registered and on their computer (they apparently don't send

any

> other notice, which I thought is strange, but whatever), (2) they

probably

> did not actually request any medical records from the docs I

listed, and

> hence just accept MY stated diagnosis (again, seems strange, but

whatever),

> (3) they mainly provide free or subsidized medical appointment

transport,

> and durable medical equipment, while any free clinic care is

handled by the

> particular clinic, and (4) they say there is no point to my mailing

to THEM,

> my blood test results showing I have MERRF (which IS precisely on

their list

> of mito diseases).

>

> So I'm assuming, based on the MDA's " permissive " honor system for

> acceptance, that the federal disability people would not be

especially

> interested in the fact that I am merely REGISTERED with them. I

already have

> (and submitted to SSDI) a letter from 2001 stating that I have

Multiple

> Symmetrical Lipomatosis (MSL), which (according to the letter) is a

> mitochondrial disease (the letter even goes on to list specific

symptoms and

> why these would be disabling). And the MDA's literature clearly

says that

> they " include " mitochondrial disease. But despite all of that, SSDI

turned

> me down for disability. In other words, what exactly do I need to

do, to

> prove I have " Muscular Dystrophy " ? I don't know what more my MERRF

test

> result proves, if they aren't going to believe that letter from a

> neurologist. I thought I already HAD a diagnosis, but then, the

people I

> dealt with at SSDI were incredibly incompetent. If they can't

figure out

> what " MSL " is, and why it qualifies me, how will they deal

with " MERRF " ? Do

> I send them an MDA brochure with the appropriate section

highlighted, which

> seems kind of lame?

>

> Second question: as near as I can figure out, the MDA clinic at MGH

is

> somehow part of, or affiliated closely with, Neurology Associates

there. And

> I have already seen a doctor (Dr. Didier Cros) in that group (and

tried to

> see him another time, more recently). BTW this is the same doc that

ordered

> the mtDNA test in the first place. So I'm not clear on what it

means to

> " make an appointment with the MDA clinic " , as to how that differs

from what

> I've already done. I expect they won't be clear on this distinction

either,

> when I call. Anyone have any clues or ideas?

>

> There was one cryptic (to me) remark by the MDA staffer, namely

that the

> " health services coordinator " of the region that includes MGH

would " be

> there " for my appointment, so perhaps that's one clue as to this

> distinction. I'm not clear on what this means (is the MDA office

there, or

> does a person from that office travel TO my appointment?), or what

would be

> the value or point, to me. I mean, it's presumed that the DOCTOR I

see is

> the specialist, so what exactly does a COORDINATOR do during my

appointment?

>

> Steve D.

>

> Date: Sat, 7 May 2005 07:56:53 -0600

> From: " Alice "

> Subject: RE: my mtDNA results...A8344G MERRF

>

> Steve,

>

> I'm very glad to read that you have a diagnosis now. Even though

it's a

> double edged sword, this opens the door to many options for you and

you

> should take advantage of them. The main one is that having the

diagnosis

> should indeed be helpful with your disability claim. They may not

> understand that this is a form of Muscular Dystrophy so making them

aware of

> that fact is quite important. Muscular Dystrophy is coded for

approval so

> that should speed things up. Additionally, you can now use the

benefits of

> the MDA. I can't tell you that their doctors are all versed on

Mito but the

> diagnosis offers other assistance that you might be able to take

advantage

> of at some point. I'd be sure to get an appointment so you are

registered

> with them.

> [...]

> Alice

[Guest guest]

It took me over two years of going to a MDA clinic to be " covered by

MDA " . Since after that I had had a muscle biopsy that showed mito,

my son was covered after his second visit (about six months).

They sent us each a packet that said essentially " Welcome to the

MDA! " . This is different than just going to appointments there.

I never had to fill out an " application " to join MDA. I was however

registered when I first visited a MDA clinic, but I was told I

couldn't do things like use the " loaner closet " or go to camp (well,

my son anyway) unless actually " approved " .

Also, the MDA clinic is essentially a " day " and a " place " being

coordinated with MDA services. The town MDA sees " regular " MDA

patients on Mondays only, and I think sees ALS patients in a special

clinic on Thursdays. If I saw the neurologist outside of the MDA

clinic, it would not be included as a MDA visit. I might even have

to ask to get records communicated between the two places (my

doctor's " home office " and the MDA clinic) since they are 50 miles

apart.

Take care,

RH

> Hi Alice

>

> First question: can you tell me more, what you mean by " Muscular

Dystrophy

> is coded for approval " regarding disability claim?

>

> Many months ago I sent in a several page app to MDA, to get their

Quest mag

> and also to just be registered in case that would be of some help

down the

> road. I eventually received that mag, but no other notification of

> acceptance. So I called my regional (Warwick, RI, even though I'm

in MA)

> health services coordinator today, and learned the following: (1) I

am

> indeed registered and on their computer (they apparently don't send

any

> other notice, which I thought is strange, but whatever), (2) they

probably

> did not actually request any medical records from the docs I

listed, and

> hence just accept MY stated diagnosis (again, seems strange, but

whatever),

> (3) they mainly provide free or subsidized medical appointment

transport,

> and durable medical equipment, while any free clinic care is

handled by the

> particular clinic, and (4) they say there is no point to my mailing

to THEM,

> my blood test results showing I have MERRF (which IS precisely on

their list

> of mito diseases).

>

> So I'm assuming, based on the MDA's " permissive " honor system for

> acceptance, that the federal disability people would not be

especially

> interested in the fact that I am merely REGISTERED with them. I

already have

> (and submitted to SSDI) a letter from 2001 stating that I have

Multiple

> Symmetrical Lipomatosis (MSL), which (according to the letter) is a

> mitochondrial disease (the letter even goes on to list specific

symptoms and

> why these would be disabling). And the MDA's literature clearly

says that

> they " include " mitochondrial disease. But despite all of that, SSDI

turned

> me down for disability. In other words, what exactly do I need to

do, to

> prove I have " Muscular Dystrophy " ? I don't know what more my MERRF

test

> result proves, if they aren't going to believe that letter from a

> neurologist. I thought I already HAD a diagnosis, but then, the

people I

> dealt with at SSDI were incredibly incompetent. If they can't

figure out

> what " MSL " is, and why it qualifies me, how will they deal

with " MERRF " ? Do

> I send them an MDA brochure with the appropriate section

highlighted, which

> seems kind of lame?

>

> Second question: as near as I can figure out, the MDA clinic at MGH

is

> somehow part of, or affiliated closely with, Neurology Associates

there. And

> I have already seen a doctor (Dr. Didier Cros) in that group (and

tried to

> see him another time, more recently). BTW this is the same doc that

ordered

> the mtDNA test in the first place. So I'm not clear on what it

means to

> " make an appointment with the MDA clinic " , as to how that differs

from what

> I've already done. I expect they won't be clear on this distinction

either,

> when I call. Anyone have any clues or ideas?

>

> There was one cryptic (to me) remark by the MDA staffer, namely

that the

> " health services coordinator " of the region that includes MGH

would " be

> there " for my appointment, so perhaps that's one clue as to this

> distinction. I'm not clear on what this means (is the MDA office

there, or

> does a person from that office travel TO my appointment?), or what

would be

> the value or point, to me. I mean, it's presumed that the DOCTOR I

see is

> the specialist, so what exactly does a COORDINATOR do during my

appointment?

>

> Steve D.

>

> Date: Sat, 7 May 2005 07:56:53 -0600

> From: " Alice "

> Subject: RE: my mtDNA results...A8344G MERRF

>

> Steve,

>

> I'm very glad to read that you have a diagnosis now. Even though

it's a

> double edged sword, this opens the door to many options for you and

you

> should take advantage of them. The main one is that having the

diagnosis

> should indeed be helpful with your disability claim. They may not

> understand that this is a form of Muscular Dystrophy so making them

aware of

> that fact is quite important. Muscular Dystrophy is coded for

approval so

> that should speed things up. Additionally, you can now use the

benefits of

> the MDA. I can't tell you that their doctors are all versed on

Mito but the

> diagnosis offers other assistance that you might be able to take

advantage

> of at some point. I'd be sure to get an appointment so you are

registered

> with them.

> [...]

> Alice

[Guest guest]

It took me over two years of going to a MDA clinic to be " covered by

MDA " . Since after that I had had a muscle biopsy that showed mito,

my son was covered after his second visit (about six months).

They sent us each a packet that said essentially " Welcome to the

MDA! " . This is different than just going to appointments there.

I never had to fill out an " application " to join MDA. I was however

registered when I first visited a MDA clinic, but I was told I

couldn't do things like use the " loaner closet " or go to camp (well,

my son anyway) unless actually " approved " .

Also, the MDA clinic is essentially a " day " and a " place " being

coordinated with MDA services. The town MDA sees " regular " MDA

patients on Mondays only, and I think sees ALS patients in a special

clinic on Thursdays. If I saw the neurologist outside of the MDA

clinic, it would not be included as a MDA visit. I might even have

to ask to get records communicated between the two places (my

doctor's " home office " and the MDA clinic) since they are 50 miles

apart.

Take care,

RH

> Hi Alice

>

> First question: can you tell me more, what you mean by " Muscular

Dystrophy

> is coded for approval " regarding disability claim?

>

> Many months ago I sent in a several page app to MDA, to get their

Quest mag

> and also to just be registered in case that would be of some help

down the

> road. I eventually received that mag, but no other notification of

> acceptance. So I called my regional (Warwick, RI, even though I'm

in MA)

> health services coordinator today, and learned the following: (1) I

am

> indeed registered and on their computer (they apparently don't send

any

> other notice, which I thought is strange, but whatever), (2) they

probably

> did not actually request any medical records from the docs I

listed, and

> hence just accept MY stated diagnosis (again, seems strange, but

whatever),

> (3) they mainly provide free or subsidized medical appointment

transport,

> and durable medical equipment, while any free clinic care is

handled by the

> particular clinic, and (4) they say there is no point to my mailing

to THEM,

> my blood test results showing I have MERRF (which IS precisely on

their list

> of mito diseases).

>

> So I'm assuming, based on the MDA's " permissive " honor system for

> acceptance, that the federal disability people would not be

especially

> interested in the fact that I am merely REGISTERED with them. I

already have

> (and submitted to SSDI) a letter from 2001 stating that I have

Multiple

> Symmetrical Lipomatosis (MSL), which (according to the letter) is a

> mitochondrial disease (the letter even goes on to list specific

symptoms and

> why these would be disabling). And the MDA's literature clearly

says that

> they " include " mitochondrial disease. But despite all of that, SSDI

turned

> me down for disability. In other words, what exactly do I need to

do, to

> prove I have " Muscular Dystrophy " ? I don't know what more my MERRF

test

> result proves, if they aren't going to believe that letter from a

> neurologist. I thought I already HAD a diagnosis, but then, the

people I

> dealt with at SSDI were incredibly incompetent. If they can't

figure out

> what " MSL " is, and why it qualifies me, how will they deal

with " MERRF " ? Do

> I send them an MDA brochure with the appropriate section

highlighted, which

> seems kind of lame?

>

> Second question: as near as I can figure out, the MDA clinic at MGH

is

> somehow part of, or affiliated closely with, Neurology Associates

there. And

> I have already seen a doctor (Dr. Didier Cros) in that group (and

tried to

> see him another time, more recently). BTW this is the same doc that

ordered

> the mtDNA test in the first place. So I'm not clear on what it

means to

> " make an appointment with the MDA clinic " , as to how that differs

from what

> I've already done. I expect they won't be clear on this distinction

either,

> when I call. Anyone have any clues or ideas?

>

> There was one cryptic (to me) remark by the MDA staffer, namely

that the

> " health services coordinator " of the region that includes MGH

would " be

> there " for my appointment, so perhaps that's one clue as to this

> distinction. I'm not clear on what this means (is the MDA office

there, or

> does a person from that office travel TO my appointment?), or what

would be

> the value or point, to me. I mean, it's presumed that the DOCTOR I

see is

> the specialist, so what exactly does a COORDINATOR do during my

appointment?

>

> Steve D.

>

> Date: Sat, 7 May 2005 07:56:53 -0600

> From: " Alice "

> Subject: RE: my mtDNA results...A8344G MERRF

>

> Steve,

>

> I'm very glad to read that you have a diagnosis now. Even though

it's a

> double edged sword, this opens the door to many options for you and

you

> should take advantage of them. The main one is that having the

diagnosis

> should indeed be helpful with your disability claim. They may not

> understand that this is a form of Muscular Dystrophy so making them

aware of

> that fact is quite important. Muscular Dystrophy is coded for

approval so

> that should speed things up. Additionally, you can now use the

benefits of

> the MDA. I can't tell you that their doctors are all versed on

Mito but the

> diagnosis offers other assistance that you might be able to take

advantage

> of at some point. I'd be sure to get an appointment so you are

registered

> with them.

> [...]

> Alice

[Guest guest]

RH

It must be different in different spots. All I had to do was make an

appointment and I was able to access everything after the first visit.

Of course this was a long time ago. Here, if seeing the same doctor

outside of clinic as in clinic, co-pays are covered.

laurie

[Guest guest]

RH

It must be different in different spots. All I had to do was make an

appointment and I was able to access everything after the first visit.

Of course this was a long time ago. Here, if seeing the same doctor

outside of clinic as in clinic, co-pays are covered.

laurie

[Guest guest]

I was initially seen as a myasthenia gravis patient, which is a MDA

covered illness, but they originally had me as " suspected neuromuscular

disease " . I am one of those " look fine but ain't " mito cases, so they

really didn't know what was going on until tests started to come in.

Maybe the local MDA is a little disorganized around these parts, or

they didn't believe I was ill initially, as I'm pretty sure it was

after my fresh muscle biopsy that I got the " welcome " letter and kit.

My co-pays at the MDA clinic are not covered, and they spend a lot of

time trying to get insurance to cover other items. One of my current

fights is that they did a lot of bloodwork in January, and the

insurance company refused to pay because the MDA clinic is at a rehab

hospital. They do many lactate and pyruvate tests every day there,

whereas at my local hospital I'm probably the only one who gets that

test. It's REALLY annoying - it's like they think a rehab hospital

cannot by definition do blood tests.

Take care,

RH

> RH

>

> It must be different in different spots. All I had to do was make an

> appointment and I was able to access everything after the first visit.

> Of course this was a long time ago. Here, if seeing the same doctor

> outside of clinic as in clinic, co-pays are covered.

>

> laurie

[Guest guest]

RH,

All MDA clinics should be working the same way as far as coverage. I think

you need to contact the coordinator and discuss this and if you don’t get

results, contact the MDA in Arizona – I can give you an e-mail address to

help if needed. I’m sorry you’ve had this experience and feel that you

need to be the squeaky wheel. Being ill, I know that’s not easy and

shouldn’t be the case.

Alice

_____

From: [mailto: ] On Behalf

Of ohgminion

Sent: Wednesday, May 11, 2005 6:45 AM

To:

Subject: Re: MD " coded for approval " ?

I was initially seen as a myasthenia gravis patient, which is a MDA

covered illness, but they originally had me as " suspected neuromuscular

disease " . I am one of those " look fine but ain't " mito cases, so they

really didn't know what was going on until tests started to come in.

Maybe the local MDA is a little disorganized around these parts, or

they didn't believe I was ill initially, as I'm pretty sure it was

after my fresh muscle biopsy that I got the " welcome " letter and kit.

My co-pays at the MDA clinic are not covered, and they spend a lot of

time trying to get insurance to cover other items. One of my current

fights is that they did a lot of bloodwork in January, and the

insurance company refused to pay because the MDA clinic is at a rehab

hospital. They do many lactate and pyruvate tests every day there,

whereas at my local hospital I'm probably the only one who gets that

test. It's REALLY annoying - it's like they think a rehab hospital

cannot by definition do blood tests.

Take care,

RH

> RH

>

> It must be different in different spots. All I had to do was make an

> appointment and I was able to access everything after the first visit.

> Of course this was a long time ago. Here, if seeing the same doctor

> outside of clinic as in clinic, co-pays are covered.

>

> laurie

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[Guest guest]

Do you mean that they should always pay the co-pay for me and my

son? Most of the time I pay the co-pay up front, like at a doctor's

office. Although I have to say I don't donate to the MDA, I figure I

donate enough

Are blood tests covered by the MDA?

And a general question, I know a few others on this list go to the

MDA clinic in town, have you had the same experience with having

to pay a co-pay?

Maybe I can call the town MDA contact about these issues...

Thanks,

RH

> > RH

> >

> > It must be different in different spots. All I had to do was make

an

> > appointment and I was able to access everything after the first

visit.

> > Of course this was a long time ago. Here, if seeing the same

doctor

> > outside of clinic as in clinic, co-pays are covered.

> >

> > laurie

>

>

>

>

>

>

>

>

> --

> No virus found in this incoming message.

> Checked by AVG Anti-Virus.

> Version: 7.0.308 / Virus Database: 266.11.8 - Release Date:

5/10/2005

>

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.308 / Virus Database: 266.11.8 - Release Date:

5/10/2005

>

>

>

>

[Guest guest]

They should be paying your co-pay every time. If the MDA doctor orders the

blood work and it’s done in the facility that houses the clinic – yes – if

your insurance does not cover the testing they should be covered by the MDA.

Alice

_____

From: [mailto: ] On Behalf

Of ohgminion

Sent: Wednesday, May 11, 2005 10:32 AM

To:

Subject: Re: MD " coded for approval " ?

Do you mean that they should always pay the co-pay for me and my

son? Most of the time I pay the co-pay up front, like at a doctor's

office. Although I have to say I don't donate to the MDA, I figure I

donate enough

Are blood tests covered by the MDA?

And a general question, I know a few others on this list go to the

MDA clinic in town, have you had the same experience with having

to pay a co-pay?

Maybe I can call the town MDA contact about these issues...

Thanks,

RH

> > RH

> >

> > It must be different in different spots. All I had to do was make

an

> > appointment and I was able to access everything after the first

visit.

> > Of course this was a long time ago. Here, if seeing the same

doctor

> > outside of clinic as in clinic, co-pays are covered.

> >

> > laurie

>

>

>

>

>

>

>

>

> --

> No virus found in this incoming message.

> Checked by AVG Anti-Virus.

> Version: 7.0.308 / Virus Database: 266.11.8 - Release Date:

5/10/2005

>

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.308 / Virus Database: 266.11.8 - Release Date:

5/10/2005

>

>

>

>

[Guest guest]

Thanks, I'll definitely talk to them about it. The thing about the

blood work is really weird - something buried in the contract but not

in the regular plan description that employees get.

Thanks,

RH

> > > RH

> > >

> > > It must be different in different spots. All I had to do was

make

> an

> > > appointment and I was able to access everything after the first

> visit.

> > > Of course this was a long time ago. Here, if seeing the same

> doctor

> > > outside of clinic as in clinic, co-pays are covered.

> > >

> > > laurie

> >

> >

> >

> >

> >

> >

> >

> >

> > --

> > No virus found in this incoming message.

> > Checked by AVG Anti-Virus.

> > Version: 7.0.308 / Virus Database: 266.11.8 - Release Date:

> 5/10/2005

> >

> >

> >

> > --

> > No virus found in this outgoing message.

> > Checked by AVG Anti-Virus.

> > Version: 7.0.308 / Virus Database: 266.11.8 - Release Date:

> 5/10/2005

> >

> >

> >

> >

[Guest guest]

In a message dated 5/11/2005 2:25:43 PM Eastern Standard Time,

justagram14@... writes:

They should be paying your co-pay every time.

Hi Alice,

Really? The MDA should pay copays for insurance? I have never had them offer

to do this for me and had no idea to even ask about this. I'll have to look

into this the next time I see my neurologist. Thanks!

Malisa

[Guest guest]

We go to the same clinic I think. It isn't exactly a rich town...

I wonder, can we get reimbursed for past copays? Also, I read on the

MDA site that if they do the blood work at the MDA clinic site,

they'll cover it, but not if it is off-site...

Could it be that local MDA clinics have different funding available?

I wonder if Ann-Marie has had the same experience...

Take care,

RH

>

> In a message dated 5/11/2005 2:25:43 PM Eastern Standard Time,

> justagram14@c... writes:

>

> They should be paying your co-pay every time.

>

>

>

> Hi Alice,

> Really? The MDA should pay copays for insurance? I have never had

them offer

> to do this for me and had no idea to even ask about this. I'll have

to look

> into this the next time I see my neurologist. Thanks!

> Malisa

>

>

>

[Guest guest]

I doubt that it has anything to do with area. If an MDA doctor writes the

script for testing and you have it done at the MDA facility – it’s a covered

benefit after it has been submitted to your insurance. The MDA pays the

rest. Here is what they cover from the website:

http://www.mdausa.org/publications/mdasvcs/index.html

I've been to two MDA Clinics in different states and have never paid one

cent for appointments or services provided thru the clinic itself.

I just pulled this off the MDA site looking for information about the

benefits. Check this out!

http://www.mdausa.org/research/050502mattie_fellowship.pdf

Alice

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[Guest guest]

I have never had MDA pay any copays for me either. I also didn't know to

ask about it. Thanks for the information!

Smiles,

a

On Wed, 11 May 2005 20:12:07 EDT Malilibear@... writes:

In a message dated 5/11/2005 2:25:43 PM Eastern Standard Time,

justagram14@... writes:

They should be paying your co-pay every time.

Hi Alice,

Really? The MDA should pay copays for insurance? I have never had them

offer

to do this for me and had no idea to even ask about this. I'll have to

look

into this the next time I see my neurologist. Thanks!

Malisa

[Guest guest]

I signed up with our local MDA and was told there was nothing else I needed to

do but when I went for my muscle biopsy yesterday(which by the way was VERY

painful- only local anesthesia), the financial counselor , nothing about the MDA

was on my account.So, I am a little confused too. I guess I need to call them

and see what is going on.

a C Koch kckoch76@...> wrote:

I have never had MDA pay any copays for me either. I also didn't know to

ask about it. Thanks for the information!

Smiles,

a

On Wed, 11 May 2005 20:12:07 EDT Malilibear@... writes:

In a message dated 5/11/2005 2:25:43 PM Eastern Standard Time,

justagram14@... writes:

They should be paying your co-pay every time.

Hi Alice,

Really? The MDA should pay copays for insurance? I have never had them

offer

to do this for me and had no idea to even ask about this. I'll have to

look

into this the next time I see my neurologist. Thanks!

Malisa

[Guest guest]

I have to tell the hospital every time that I am an MDA patient. It is not

noted on my records.

Alice

_____

From: [mailto: ] On Behalf

Of Bristow

Sent: Thursday, May 12, 2005 4:42 AM

To:

Subject: Re: Re: MD " coded for approval " ?

I signed up with our local MDA and was told there was nothing else I needed

to do but when I went for my muscle biopsy yesterday(which by the way was

VERY painful- only local anesthesia), the financial counselor , nothing

about the MDA was on my account.So, I am a little confused too. I guess I

need to call them and see what is going on.

a C Koch kckoch76@...> wrote:

I have never had MDA pay any copays for me either. I also didn't know to

ask about it. Thanks for the information!

Smiles,

a

On Wed, 11 May 2005 20:12:07 EDT Malilibear@... writes:

In a message dated 5/11/2005 2:25:43 PM Eastern Standard Time,

justagram14@... writes:

They should be paying your co-pay every time.

Hi Alice,

Really? The MDA should pay copays for insurance? I have never had them

offer

to do this for me and had no idea to even ask about this. I'll have to

look

into this the next time I see my neurologist. Thanks!

Malisa

[Guest guest]

The procedure has changed at the town MDA clinic. I used to go

to a registration desk, and they asked " what are you here for? " and I

said " MDA clinic " . They never asked which doctor, but they always

asked for my insurance card and copay.

Now I go directly to the intake nurse's office, and I don't see

anyone staffing the registration desk. Pretty much I walk in, go to

the first door on the right, and that's the intake nurse. There is

no " hospital " procedure I have to go through to see the MDA doctor.

At another MDA clinic, they sent me in the back of the hospital where

the free clinic and MDA clinic doctors were, and the paperwork was

done away from the main hospital billing. At a third, it was more

like a regular doctor visit at a medical school, huge waiting room

and everybody seeing different doctors for different things. I think

at that place I was seeing a doctor who was part of the MDA clinic,

but it must not have been on a clinic day, so reimbursement wasn't an

issue. There was no sense of a " clinic " being held.

I consistently get bills from the hospital where the MDA clinic is

held, but my understanding is that they keep trying to get the money

from the insurance company, and if that fails they will pay it.

Seems that the patient needs to be notified if the insurance company

is billed.

Sorry to hear about the pain, keep ice on the incision site and get

some rest!

Take care,

RH

> I have never had MDA pay any copays for me either. I also didn't

know to

> ask about it. Thanks for the information!

> Smiles,

> a

>

> On Wed, 11 May 2005 20:12:07 EDT Malilibear@a... writes:

>

> In a message dated 5/11/2005 2:25:43 PM Eastern Standard Time,

> justagram14@c... writes:

>

> They should be paying your co-pay every time.

>

>

>

> Hi Alice,

> Really? The MDA should pay copays for insurance? I have never had

them

> offer

> to do this for me and had no idea to even ask about this. I'll have

to

> look

> into this the next time I see my neurologist. Thanks!

> Malisa

>

>

[Guest guest]

I called our local MDA, and they said that their MDA grant " can't

cover co-pays, because of insurance rules " (possibly a state rule

maybe?). They did mention that there is a MDA grant for each clinic,

and once the grant is expended, the local hospital pays for the

fees. It might be possible that the local hospital is covering the

co-pay for the MDA clinic patients at other clinics, but not the MDA

(according to our local office).

She did say that blood/diagnostic tests at the MDA clinic location

are covered, so I'm definitely pushing for lots of blood tests on our

next visit

So, anyway, it seems the town MDA won't pay co-pays, anyway,

sorry guys. I wouldn't look a gift horse in the mouth if your clinic

(or hospital)does pay them...

Take care,

RH

> > I have never had MDA pay any copays for me either. I also didn't

> know to

> > ask about it. Thanks for the information!

> > Smiles,

> > a

> >

> > On Wed, 11 May 2005 20:12:07 EDT Malilibear@a... writes:

> >

> > In a message dated 5/11/2005 2:25:43 PM Eastern Standard Time,

> > justagram14@c... writes:

> >

> > They should be paying your co-pay every time.

> >

> >

> >

> > Hi Alice,

> > Really? The MDA should pay copays for insurance? I have never had

> them

> > offer

> > to do this for me and had no idea to even ask about this. I'll

have

> to

> > look

> > into this the next time I see my neurologist. Thanks!

> > Malisa

> >

> >

[Guest guest]

In a message dated 5/12/2005 4:06:56 PM Eastern Standard Time,

rakshasis@... writes:

called our local MDA, and they said that their MDA grant " can't

cover co-pays, because of insurance rules " (possibly a state rule

maybe?).

Hi RH,

I used to go to the town MDA Clinic, but now go to the clinic at

Hahnemahn. I'll have to ask them the next time I go what the rules are regarding

copays and see if they give me the same answer.

Thanks for looking into this!

Malisa

[Guest guest]

Thanks for your reply, Alice, and other contributors to this thread.

Date: Mon, 9 May 2005 21:03:06 -0600

Subject: RE: MD " coded for approval " ?

> I guess I used the wrong word when I used the word " code. " A better way

to

say it would be that MD is a disease recognized by SS as a disability

related disease. This is something that they are familiar with - not Mito

but Muscular Dystrophy. There are over 40 diseases under the umbrella of

Muscular Dystrophy but the common term for SS is Muscular Dystrophy.

Good to know what supposedly turns them on, at SS. Now the trick is, how to

get a doctor to write a letter for me, that at least mentions MD. I

currently don't have what I would call a relationship with any doctor, other

than a well-meaning but completely mystified general internist.

I'm clearly developing some kind of cervical spine problem, and the only

neurologist I " see " has blown me off and skipped town (I'm now scheduled to

see him end of May, but I've learned not to assume anything with him). So I

pulled my usual scam, " sort of " getting permission from his office staff

(who will tell me anything if they think it will get me to stop calling) to

call the neurological SURGERY people at MGH and represent that my doc has

referred me.

I called twice this week and left messages. Today I called one more time.

This THIRD time I spoke to a very curt person who asked me to confirm that I

had " free care " at MGH (she had obviously already looked me up). Then she

said the doc there " did not accept free care " . This would be a funny twist

of phrase, if it wasn't so serious in its implication. I understood from her

that this must be some strange thing within MGH, and that I was yet again

just out of luck. I don't believe they were EVER going to call back and tell

me this.

> It's interesting that you called Warwick for your MDA health service

coordinator. My first visit to an MDA Clinic was from that very same

office. I am a former resident of RI. The coordinator must be present

because the MDA pays for all appointments. Usually, they meet you and bring

you in to see the neurologist. Sometimes they stay and sometimes they leave

but they are your liaison between the doctor and the MDA who provides the

services. If the doctor prescribes equipment, therapy or follow up

appointments - this coordinator is there to make sure it takes place. The

neurologists who are seen in the MDA Clinics usually have private offices

and only go to the clinic on assigned days. They handle more than muscular

dystrophy cases. Most of them are pretty uninformed when it comes to Mito

but because you have the diagnosis - you still qualify for the programs the

MDA offers. It's really worth it to have them as part of your team.

I wish I had your confidence, about adding another layer of also-uninformed

bureau-crazy. It would sure be nice to have a team of ANY kind, so I'll give

them a try. At MGH, confusingly, the " private offices " are in the same place

as the MDA clinic, as near as I can tell.

> You need to call the coordinator back and get an appointment if you want

to

include them in your team. Sometimes, it takes months to get in and don't

expect wonderful medical treatment. If you're like most of us, you'll find

that you are training again but these are the professionals who deal with

muscular dystrophies every day. Trust me when I say that this is a good

idea though.

I'm unclear on this. You say I'll be training again, but they deal with MD

every day. Then what will I be training? I can help them look up MERRF (it's

on page 6) in the MDA " Mitochondrial Myopathies " pamphlet. What I'm really

hoping to find, though, is ANYONE who knows ANYTHING AT ALL about

mitochondrial diseases. I'd be happy to just meet a doctor who has never

even heard of it, if only they would READ the journal articles I can supply

to them.

In what sense do they " deal with " these 40-odd diseases, if they are " pretty

uninformed when it comes to Mito " , which is one of the 40? I " don't expect

wonderful medical treatment " anywhere, anymore. Mostly I view doctors as

just the people who can order the tests, and then I'll try my best to

interpret the results (after first double-checking that the results are

actually for the test that was ordered) because they sure can't.

Also, the Warwick coordinator told me outright that I should call the

clinic, and that she didn't make these appointments. But she did say that,

despite being in the Warwick coverage zone, I could still go to the MGH

clinic. So I'm going to call the other coordinator, for the zone that

includes MGH, just to see what additional wild-gooses I can go on. :-)

Very very sorry if I come across a bit testy, I wish I wasn't. I'm not

blaming you for my confusion. In any case, I really mean the questions

above, not just being sarcastic.

Steve D.

[Guest guest]

Steve

I see an MDA doc in an area other than the one I live in. I have to

call the area of the clinic coordinator for an appointment. The first

few years it took a phone call each year to get put back on that areas

list as a patient, but as they became familiar with who I am, that no

longer happens. I know that oringinally my " balance " bills were sent

to the local office for payment, but I don't think that happens

anymore.

When seeing an MDA doc for mito, it is the luck of the draw. I have

seen two docs (one a ped neuro and the other in my local area) who

both didn't want to dig deeper. My current one had a slight knowledge

when we brought it up, but didn't know where to send us for diagnosis.

I was lucky that he is not afraid to learn and now knows almost as

much as the mito docs (they started out the same way) and has contacts

with the mito specialist if he has a question. I hope you have the

same luck.

laurie

> Thanks for your reply, Alice, and other contributors to this thread.

>

> Date: Mon, 9 May 2005 21:03:06 -0600

>

> Subject: RE: MD " coded for approval " ?

>

> > I guess I used the wrong word when I used the word " code. " A better way

> to

> say it would be that MD is a disease recognized by SS as a disability

> related disease. This is something that they are familiar with - not Mito

> but Muscular Dystrophy. There are over 40 diseases under the umbrella of

> Muscular Dystrophy but the common term for SS is Muscular Dystrophy.

>

> Good to know what supposedly turns them on, at SS. Now the trick is, how to

> get a doctor to write a letter for me, that at least mentions MD. I

> currently don't have what I would call a relationship with any doctor,

> other

> than a well-meaning but completely mystified general internist.

>

> I'm clearly developing some kind of cervical spine problem, and the only

> neurologist I " see " has blown me off and skipped town (I'm now scheduled to

> see him end of May, but I've learned not to assume anything with him). So I

> pulled my usual scam, " sort of " getting permission from his office staff

> (who will tell me anything if they think it will get me to stop calling) to

> call the neurological SURGERY people at MGH and represent that my doc has

> referred me.

>

> I called twice this week and left messages. Today I called one more time.

> This THIRD time I spoke to a very curt person who asked me to confirm that

> I

> had " free care " at MGH (she had obviously already looked me up). Then she

> said the doc there " did not accept free care " . This would be a funny twist

> of phrase, if it wasn't so serious in its implication. I understood from

> her

> that this must be some strange thing within MGH, and that I was yet again

> just out of luck. I don't believe they were EVER going to call back and

> tell

> me this.

>

> > It's interesting that you called Warwick for your MDA health service

> coordinator. My first visit to an MDA Clinic was from that very same

> office. I am a former resident of RI. The coordinator must be present

> because the MDA pays for all appointments. Usually, they meet you and

> bring

> you in to see the neurologist. Sometimes they stay and sometimes they

> leave

> but they are your liaison between the doctor and the MDA who provides the

> services. If the doctor prescribes equipment, therapy or follow up

> appointments - this coordinator is there to make sure it takes place. The

> neurologists who are seen in the MDA Clinics usually have private offices

> and only go to the clinic on assigned days. They handle more than muscular

> dystrophy cases. Most of them are pretty uninformed when it comes to Mito

> but because you have the diagnosis - you still qualify for the programs the

> MDA offers. It's really worth it to have them as part of your team.

>

> I wish I had your confidence, about adding another layer of also-uninformed

> bureau-crazy. It would sure be nice to have a team of ANY kind, so I'll

> give

> them a try. At MGH, confusingly, the " private offices " are in the same

> place

> as the MDA clinic, as near as I can tell.

>

> > You need to call the coordinator back and get an appointment if you want

> to

> include them in your team. Sometimes, it takes months to get in and don't

> expect wonderful medical treatment. If you're like most of us, you'll find

> that you are training again but these are the professionals who deal with

> muscular dystrophies every day. Trust me when I say that this is a good

> idea though.

>

> I'm unclear on this. You say I'll be training again, but they deal with MD

> every day. Then what will I be training? I can help them look up MERRF

> (it's

> on page 6) in the MDA " Mitochondrial Myopathies " pamphlet. What I'm really

> hoping to find, though, is ANYONE who knows ANYTHING AT ALL about

> mitochondrial diseases. I'd be happy to just meet a doctor who has never

> even heard of it, if only they would READ the journal articles I can supply

> to them.

>

> In what sense do they " deal with " these 40-odd diseases, if they are

> " pretty

> uninformed when it comes to Mito " , which is one of the 40? I " don't expect

> wonderful medical treatment " anywhere, anymore. Mostly I view doctors as

> just the people who can order the tests, and then I'll try my best to

> interpret the results (after first double-checking that the results are

> actually for the test that was ordered) because they sure can't.

>

> Also, the Warwick coordinator told me outright that I should call the

> clinic, and that she didn't make these appointments. But she did say that,

> despite being in the Warwick coverage zone, I could still go to the MGH

> clinic. So I'm going to call the other coordinator, for the zone that

> includes MGH, just to see what additional wild-gooses I can go on. :-)

>

> Very very sorry if I come across a bit testy, I wish I wasn't. I'm not

> blaming you for my confusion. In any case, I really mean the questions

> above, not just being sarcastic.

>

> Steve D.

>

>

>

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