SSDI woes

[Guest guest]

Hi all

Because I'm physically and emotionally exhausted, rather than re-type I've

pasted below what I sent elsewhere. My attempt to get SSDI is now in its

18th month...and I'm not holding my breath.

Steve D.

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Today I received a letter from SSA saying that they had denied my

reconsideration for SSDI.

I have engaged an attorney specializing in disability claims: ne

Soprano [...]. I met with her a couple of weeks ago, gave her quite a bit of

info, and will be meeting again (now that this denial has occurred) to give

her some more info and review the strategy. She will be working on the usual

contingency basis.

From what I understand from her, and elsewhere, it is normal for unusual

cases to be denied at the initial and second (reconsideration) level,

because they both are usually based on the so-called " presumptive " list of

diseases. According to Ms. Soprano, and the details of the letter, there is

plenty of basis for successful appeal at the next " judiciary " level, where

there will be an in-person hearing with an administrative law judge (ALJ).

The request for this will be filed ASAP. The grounds for appeal are:

1) They (Disability Determination Services, DDS) apparently did not know or

consider the usual symptoms of MSL (despite my providing same...seems they

routinely ignore what a patient provides, at this level).

2) They didn't receive all the records that they either requested, or should

have requested, based on my app.

3) There have been new tests further confirming the MSL diagnosis and

supporting my reported symptoms, that they either didn't yet receive or are

still pending.

4) The denial says among other things that I can stand for most of the day,

yet they never actually tested for that in any way, and it's not true.

5) THEY ordered a Pulmonary Function Test (PFT), which got delayed by the

testing hospital they selected, yet they ruled anyway without waiting for

the test result.

6) They seemed to have ignored the very important letter from Dr. Toran,

detailing my diagnosis, some test results, and symptoms. Again, I enclosed

this but they should have either used it or waited for records from Dr.

Toran which would have contained same.

7) The denial says among other things that I have been evaluated and TREATED

for MSL. In fact, I have not been treated. There is no treatment, other than

a couple of over-the-counter vitamin-like supplements which are not

generally prescribed (and certainly weren't, for me). It is well documented

in the medical literature, which they of course didn't consider, that MSL

and its neurological symptoms don't go away but in fact always gets worse.

The two surgeries I've had are " helpful " in slowing the progress, but can't

make it go away.

8) MSL is EXTREMELY rare, and is typically known to be present and disabling

long before a formal diagnosis (due to its unusual characteristics). I have

been reporting (to my PPO doc) extreme fatigue, chronic severe headaches,

and of course the lipomas themselves (two surgeons didn't identify the MSL),

for many years.

Re the PFT above, I was ordered to appear on 2/18/05 for a doctor's exam and

PFT. At the doc's office that day they said they don't make the PFT

appointment (at the hospital down the street) until the person shows up, and

they couldn't schedule it until 3/10/05. When I went for that test, they

said that the pulmonologist who would write the report from the raw data was

on vacation until 3/21/05. For unknown reasons, the report still hasn't been

received at DDS, as far as I know.

Re the " still pending " test above, this is a battery of blood tests that

looks for a mutation in mitochondrial DNA (mtDNA). This test is very

specialized (and expensive) and takes a very long time to get results. What

with delays getting the appointment, waiting for results to come back, and

then more delays getting the results from Dr. Cros' office at MGH, the blood

draw was done on 12/13/04 and I received the results on 3/4/05. Incredibly,

the testing facility in Worcester had performed and prepared a nine-page

report for the WRONG TEST (and, typically, no one noticed this until I

pointed it out). So it's now being repeated, and results are expected

4/11/05. Of course, I wouldn't count on that date, but that's what I've been

told. I understand that about 15% of MSL patients show one or two particular

mtDNA mutations (MERRF or MELAS), so a negative is not proof that I don't

have it, but a positive is proof that I do.

Just by the way, I have applied for MassHealth and MDA (Muscular Dystrophy

Assoc.) benefits. I was turned down initially by MassHealth because of the

delays in getting SSDI approval AND my wife's income at the time. I've

re-applied because my wife is now unemployed. The MDA benefits may cover the

cost of visiting an MDA clinic (there's one at MGH) for various services.

Ms. Soprano thinks my case is likely to succeed (given that I have an usual

illness but a lot of good supporting documents and test results), but who

knows?

Regards

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