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I was rejected by the MDA as well. I wasn't one of the 40 they treat. No

name, no help. They would continue to test I guess, but I am done with those

test.

They referred me to a rare disease doctor.

Since 2000, I cannot get any other insurance without the same, high cost.

Preexisting, sucks. So I must stay with the major medical only at a cost of $668

per month and no out patient services, only out of pocket services. So we are

selective in what the doctors order and do as I pay for it, not some insurance

company. These test are outrageously expensive and I have not seen where it

is justified. $1200 for an EMG. I felt like I just paid for my own torture.

When his billing department saw my insurance doesn't cover that, they gave me a

20% discount for paying cash. Gee how nice.

We seem to have to wait till they give it some kind of name or something so I

can qualify for Medicare. I got so frustrated, stressed, depressed (just a

little) that I decided to he.. with them all. It's my life and I must make the

best of it with what God has given me. I will or have already fallen into the

crack of no return. There are so many in position. Someday though I hope that

this gets better but realistically, I'm probably going to go down fighting

cause nothing is easy in this world, not even this disease.

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When you must have a test, ask the doctor's office to accept the

same fee as they get from an insurance company or Medicare. Why

should an individual have to pay more than a multi-billion-dollar

corporation? I did that when I had a nuclear stress test that wasn't

covered. It took some arguing, but they did it and the cost

difference was tremendous. Don't give up the fight.

Edith

> I was rejected by the MDA as well. I wasn't one of the 40 they

treat. No

> name, no help. They would continue to test I guess, but I am done

with those test.

> They referred me to a rare disease doctor.

>

> Since 2000, I cannot get any other insurance without the same,

high cost.

> Preexisting, sucks. So I must stay with the major medical only at

a cost of $668

> per month and no out patient services, only out of pocket

services. So we are

> selective in what the doctors order and do as I pay for it, not

some insurance

> company. These test are outrageously expensive and I have not seen

where it

> is justified. $1200 for an EMG. I felt like I just paid for my own

torture.

> When his billing department saw my insurance doesn't cover that,

they gave me a

> 20% discount for paying cash. Gee how nice.

>

> We seem to have to wait till they give it some kind of name or

something so I

> can qualify for Medicare. I got so frustrated, stressed, depressed

(just a

> little) that I decided to he.. with them all. It's my life and I

must make the

> best of it with what God has given me. I will or have already

fallen into the

> crack of no return. There are so many in position. Someday though

I hope that

> this gets better but realistically, I'm probably going to go down

fighting

> cause nothing is easy in this world, not even this disease.

>

>

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Good advice on the insurance " angle " .

On CNN yesterday they posted the costs for various treatments. These

figures are not exact but maybe in the ballpark. An apendectomy with

Medicare was like $4000 plus some, with insurance $10,000 plus, without

insurance $15,000 plus. As I said, these are not correct figures but an

example of the distortion they showed in the various treatments. It's

idiotic!

My best friend who in charge of the DA office here and very smart, had a

bad car wreak. She was in hospital for weeks and then rehap. The

insurance sent her a check for the hosp bill. She returned it and asked

that her name also be added along with the hospitals. She settled with

the hospital for less than they billed the ins. co. and she kept the

rest. Never used a lawyer, said the difference she received more than

made up for it.

I have also noticed that a hospital will keep you longer if you have

regular ins. than on medicare.

Thanks, Edith, for your postings, they really help, especially for those

of us still seeking answers.

Arlene in Texas

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I get so much from the people on this list, I'm glad that I can

share something that will help others.

Edith

> Good advice on the insurance " angle " .

> On CNN yesterday they posted the costs for various treatments.

These

> figures are not exact but maybe in the ballpark. An apendectomy

with

> Medicare was like $4000 plus some, with insurance $10,000 plus,

without

> insurance $15,000 plus. As I said, these are not correct figures

but an

> example of the distortion they showed in the various treatments.

It's

> idiotic!

> My best friend who in charge of the DA office here and very smart,

had a

> bad car wreak. She was in hospital for weeks and then rehap. The

> insurance sent her a check for the hosp bill. She returned it and

asked

> that her name also be added along with the hospitals. She settled

with

> the hospital for less than they billed the ins. co. and she kept

the

> rest. Never used a lawyer, said the difference she received more

than

> made up for it.

> I have also noticed that a hospital will keep you longer if you

have

> regular ins. than on medicare.

> Thanks, Edith, for your postings, they really help, especially for

those

> of us still seeking answers.

>

> Arlene in Texas

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Dear Cookie,

I am so behind on my e-mails. I think the PLS umbrella under the MDA grant

is left up to the head Dr. of the clinic. I would ask him/her before you

give up. Explain your situation!!! I cannot believe $2214 a month. Good luck

with your emg!! I have been recently rediagnosed with ALS from our ALS/MDA

clinic. I believe they know what they are doing. And I trust them for now!!!

Good luck. Keep you in my prayers for the emg.

MDA info

>

> Hi Friends...Not long ago I was complaining about my New York insurance

company raising my monthy premium to $677. We now have moved to North

Carolina and had to find a new insurance comapny. Down here the only one

that will not reject you because of medical problems is Blue Cross/Blue

Shield of North Carolina. Well after examining my health status, breast

cancer, PLS, they want $2214 a MONTH. As a result we are self insured.

> I was told by a MDA rep, that they would cover up to 4 visits per year,

any testing, and up to $2000 per year on bracing...so I was able to get a

visit a Duke University. My Duke neuro want's to rule out (once again) ALS,

so I have to get a EMG/nerve conduction test. If my diagnosis remains PLS

they don't pay...only ALS. I thought we all were under the umbrella of ALS.

Anyone have a clue? (they are paying for my first visit, and my EMG, as I am

under R/O ALS) Has anyone had experience with this?

> Have a wonderful Sunday!!!!

> Cookie from NC

> ****************************

> Man's way leads to a hopeless

> end..God's way leads to an endless

> hope.

>

>

>

>

>

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