MD coded for approval?

[Guest guest]

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

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