Re: Re: MDA Question/ Amy R

[Guest guest]

are you guys coming to the meeting tonight?

Kristal

Mom to Brett- SMA II (7-1/2 years old)

" Life is 10% what happens to you and 90% how you respond to it. " ~anonymous

Visit Brett's at: http://www.our-sma-angels.com/brett

and www.caringbridge.org/visit/brettwilson

Buy Brett Gear at: http://www.cafepress.com/b4sma/2834914

Learn more about SMA:

www.smasupport.com

www.fsma.org

Re: MDA Question

My son goes to the MDA clinic in Kansas City, and we too had some

issues at first, particularly with getting ahold of someone or

getting someone to return our phone calls. Truthfully, the doctors

have been ok, but we have another doctor in town who knows a lot more

about SMA that we see twice a year as well. We already had the SMA

diagnosis when we first attended MDA, so we basically go to the once

a year appointment just to stay qualified for the funding they

provide. They did cover my out of pocket expense for my son's

wheelchair, and they really promote the MDA summer camp which my son

is eligible to start attending next summer (and he is very excited

about that). I think they are a good organization overall, but seem

to have some organizational issues sometimes. Probably a lack of

sufficient staffing like just about everywhere else it seems. I

really cannot explain how they could mis-diagnose something that

seemed so straight-forward however. It seems SMA is still a very

overlooked disease by a lot of doctors. It took over a year of tests

at our local children's hospital by a pediatric neurologist to

finally diagnose my son.

>

> Hi Everyone. I just have a few questions for those of you who may

> know the polices. I am not bad mouthing anyone or trying to start a

> argument. I haven't been in a almost 2 years. I have now called 4

> times and left messages for an appointment in Texas and no return

> call. I also called 2 times asking to see if I could get help with

> Batteries for my scooter. I always have to leave a message.

>

> Here is the 2nd part and I guess it started bothering me after the

> telethon. I was dx at 30 years old. I was about 28 and I went for

> Genetic counseling for my son. She ended up looking me over for an

> hour and thought I had limb Girdle M/D. She sent me to the MDA

Clinic

> in Ft Myers Florida. The Doc ordered an MRI of my C spine and an

EMG.

> This was my 4th one since I was 1st looked at to see what was

wrong.

> They got the test results back and said I had no form of M/D. He

said

> i should come see him at his private practise and I went there and

> had blood test after blood test not a DNA test and he couldn't find

> anything. I gave up on him and a year later moved to Kansas and

went

> to the MDA Clinic there. Same test but he said he did an MRI of the

> wrong part of my spine so he re did it and an emg. It all came back

> and he said I was a puzzle. My insurance company refused to pay for

> another MRI and I got stuck with a 980.00 bill. He then ordered a

> spinal tap and a whole bunch of other test. Since he had no clue

what

> was wrong I didn't want to go through those test. I called the Mayo

> Clinic and ended up going there. The Doctors intern came into my

room

> and said they were 90% sure they knew what was wrong. He wrote it

> down and folded it up and then both doc's examined me. After that

> they said SMA Type III and it was what they had written. They did

> another EMG and sent out for a DNA test that was positive. My

> insurance company charged me out of network and I am still paying

off

> my part a little over 6 Grand. Now if you were to read the MDA's

> section on SMA Type III. It matches what I described in my records

to

> at T. Shouldn't the Doctors of the MDA know there own diseases. i

> mean had I read it I would have known right away. So I took my bill

> from the mayo and a copy of the insurance bills from the mda they

had

> billed in total almost 9k. Plus who knows how much the other test

> would have been. I asked if they could help me with that bill I got

> an No as fast as she could. I said an intern knew what was wrong

> after 2 MdA clinic's had no clue how to identify there own disease.

> do you guys go there for check ups? Am I being stupid to think this

> would have been a good way to spend some of the almost 1.5 Billion

> dollars they have collected. Should I keep on calling until they

> answer me back. Ah what to do. Anyway Thanks for letting me get

that

> off my chest. I am not trying to bash anyone really I hope it

doesn't

> come across that way.

>

> Thank you

>

> Terry

>

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