MDA Clinic

[Guest guest]

Today was my yearly visit to the MDA clinic. My neurologist said I look great

since my last visit. I asked about exercises I could do & if I could take any

vitamins, etc to maintain a healthy life. He told me I should take 500 mg of

vitamin c twice a day & also a multivitamin. I was givin some arm exercises to

do as to keep my upper body from worsening. Forget about my lower half as I

cannot walk & use a wheelchair since I was 16. He also suggested I see a

pulmologist (sp?). I suffer from headaches almost daily & he thinks it could be

how well I sleep at night. He mentioned tension as a factor also. That is

something that is hard to control for me. I am so glad I lucked out & found a

great neurologist. He is very knowledgable about CMT.

Kerry

[Guest guest]

and others,

I'm pretty sure the MDA pays up to $2,000 per year per person with any

diagnosis under MDA.for all states here in the US. They just choose who they

help.I had to threaten law suit before the MDA coordinater for our district here

ould barely speak to tell me. Don't get me wrong; I have never sued anyone, I

don't even believe in it.But when my sisters MDA dr wrote down she had CMT 1A

and her regular dr told her in 2 to 3 years there will be a drug for it coming

from Europe for that type I wanted a blood test because we were all told we had

CMT x-linked dominant, which they call CMT 1X now.

The MDA dr told me that the test cost $2,000 and my medicaid don't pay for it

and MDA only will pay 20%. She failed to tell me that Athena has financial aid

for low income people. MDA ended up only paying $220. I learned that my state

medicaid paid $860 thanks to a nice lady from Athena I talked to on the phone

and they accidentally sent me papers they weren't suppose to. LOL

Anyhow, we don't have the 1A so now back to square one. Thank God though that

people like me are not afraid to spek up and help ourselves and others.

[Guest guest]

Hi Everyone!

Our local MDA has been an invaluable resource for our family with regards to

's CMT. Thanks to MDA his power assist chair cost our family nothing.

What insurance didn't cover, they did.

You need to be a member of the MDA in order to receive assistance. All that

means is that you complete the paperwork and are seen periodically in the MDA

clinic. They do not pick and choose who they will assist. At least that has not

been the experience for my family, or that anyone in the Orlando area has had

with them.

It doesn't sound from the price that you had a complete CMT panel done by

Athena. MDA contributed to the cost of your testing. It is a charitable

organization and perhaps your office has so many patients that the amount

available for each one is less that $2,000 per year and then that amount is

budgeted for testing/accessibility hardware, etc. I know that our office has

reduced the funding available per patient because donations were seriously off

last year in our area. I also don't think that it is the responsibility of the

MDA to know what financial assistance may or may not be available through other

organizations such as Athena. As patients, we need to gather information and

advocate for ourselves.

My family is exceedingly grateful to the Muscular Dystrophy Association for all

of it's help and support over the years.

Serisously , if something is going on in your area office that you feel is

improper, or that medical treatment in the clinic is improper, then you owe it

to yourself and others in your area to contact the corporate offices and make

your concerns known. Give the MDA a chance to explore and correct what needs to

be corrected.

Just my experience and thoughts.

[Guest guest]

Wow!

Great! What kind of ins do you have? Mine is Medicaid. I must be in the wrong

state because as I said, the lady here in our district office told me as she

could hardly speak after they heard law suit, I was eligible for $2,000 a year

from MDA and since the test is $2,000 we'd have to wait until next year since

they had just paid for my visit with the MDA dr. Um, my ins paid for that, and

I have a copy of that. I called and requested a copy from the state

of Iowa what they had paid for. And you don't have to go to them regularly to

get things paid for. One simple phone call or email will do it. Not everyone

can get to MDA clinic appointments, so they have a new thing through MDA where

they'll come get you. But wait, in Iowa they will if you're under Iowa Care;

which means the state pays for it. But the only way to be under Iowa Care is if

you're unemployed or underemployed with no ins. NOT disabled or while receiving

Medicaid ins. Hmm, pretty messed up.

So I had to go on a bus that only goes to Iowa City on a non-MDA clinic day to

sit there for hours to see the new MDA appointed dr for 10 minutes and get no

satisfaction. And I have been registered with them for 25 years and never missed

an appointment when I was able to get myself and my son there. A friend of mine

who also has CMT was

having to pay for soles for his shoes 2 or 3 times a month because they told him

they could only get them paid for if he went to see them.

That's a lot of wear and tear on a vehicle, not to mention gas and energy going

2 hours away from home 2 or 3 times a month, especially when you're on

disability and have no spouse. They take care of my son right away now when his

electric wheel chair he paid payments for used needs batteries. He calls and she

says no problem, have the medical equipment place call me and I'll take care of

it. I

almost called the main headquarters in Arizona and I will later on if I have to.

I am on SSI and state Medicaid so I suppose that's why I get treated badly. I've

never paid into the system. Not everyone is able to.They DO choose who they will

help. Sad but true. I had my son who has CMT bad and so did my mom.

My dad got hit by a drunk driver when I was 18 and it left him not only

physically handicapped, he had major brain damage because of it. My brother was

only 10 when it happned and my sister was already married in Cali. I had my

hands full. I did marry and worked with my now ex in his drywall and paint

business but he never took taxes or anything out on me. But I did work until we

divorced.

It is the MDA's responsibility to assist people when they've given

a diagnosis of one type of CMT and then write down another type then they ignore

you when you want to be tested because your sister's regular dr says there will

be a drug coming from Europe. ( with no side effects - our awesome FDA has been

sitting on it ) Seriously, they need to get things straight. They wouldn't have

done anything if I hadn't had copies with my diagnosis on it. I always had

copies sent to me and my regular dr of every MDA clinic visit. So I dropped that

on them when they said they lost our records.

Again, seriously, just because I on't have a title, or a spouse with one and my

only ins card is from the state, it doesn't give them the right to NOT treat me

with respect or compassion. They certainly have compassion when they are on TV

crying for money. And I'm pretty positive Jerry don't know the half of

it. And like if I complain they're going to get right on it.

[Guest guest]

From my experience: the MDA clinic diagnosed me, at the time I did not have any

form of ins. All I had to go on was these symptoms that kept getting worse every

year, that prompted me to look for my natural parents (in my early 20's) and

reasearch their health history. That's where I found CMT in my natural fathers

side, he and his brother had it, got it from his mother, his mother and her

sister had it.

My family doc signed the papers the Alabama MDA sent so I could see the B'ham

clinic, they did a EMG test but no DNA. The doc signed all the papers to start

disability, I was not in the beginning stages at the time of diagnosis.

The MDA paid for my first pair of AFOs, made a few weeks after diagnosis. They

later paid the 20% Medicare did not cover on a second pair a few years later. I

have great appreciation to the MDA, I just wish they had the ability to help us

in more ways.

Sashi

[Guest guest]

,

I understand your frustration with your local MDA office. I am in Las Vegas and

the Neurologist whom I have seen twice now has never even looked at my feet! It

has been six months and they finally referred me to Hangar prosthetics for

braces. When I asked if I could have a diagnosis of my CMT for medical records

they told me to go to the Dr. that originally diagnosed me.

Well that was 35 years ago and in another state. I have had no luck trying to

track the records. I can't seem to get a straight answer from them, only run

around. I guess it depends who is running the local office. I am glad to hear

that they are so helpful in other states.

I'm thinking of maybe knocking on Jerry's door and asking him what is up with

Las Vegas's MDA office!

[Guest guest]

:

Check with the main office manager or if you had blood work done somewhere else,

check there.

Marin

Re: MDA clinic

,

I understand your frustration with your local MDA office. I am in Las Vegas

and the Neurologist whom I have seen twice now has never even looked at my feet!

It has been six months and they finally referred me to Hangar prosthetics for

braces. When I asked if I could have a diagnosis of my CMT for medical records

they told me to go to the Dr. that originally diagnosed me.

Well that was 35 years ago and in another state. I have had no luck trying to

track the records. I can't seem to get a straight answer from them, only run

around. I guess it depends who is running the local office. I am glad to hear

that they are so helpful in other states.

I'm thinking of maybe knocking on Jerry's door and asking him what is up with

Las Vegas's MDA office!

[Guest guest]

,

It is sad. I hope you're able to get it straightened out. My grandmother was a

nurse and saw lots of things going on. She always told me to get copies of

medical records and hang on to them or at least have them sent to my regular dr

so I did. Not that it solved the whole problem but at least they were put in

their place, and at least my son and my friend don't have to go see them when

they need something.

They did help me out with braces 15 years ago but I ended up on the ground more

than I was on my feet with them and they never

gave me any other options or referred me to a PT like some of the others here in

this group. Again, I'm sure it depends on the type of ins. Plus MDA gets grants

from the government too, so I'm sure they might be under the thumb some. Good

luck to you.

[Guest guest]

There is a large variation in MDA clinics based on our experience. The first

doctor my husband was seen by with was from USC. The problem was he was always

out of town lecturing, so we moved over to UCLA, where the treatment was okay,

but he wasn't allowed to see the doctors privately and getting an appointment

was very difficult. The last straw was when we showed up for his appointment

after an hour and one half drive, and they didn't have him on the books; they

admitted the mistake was theirs, but they refused to squeeze him in. They

wanted him to come back weeks later.

Then we went to Santa Barbara where everything was better. They paid $2.000

toward his scooter, sent him for braces to an orthotist who was better than the

one UCLA recommended, and we could get appointments quicker than UCLA. We now

see that doctor privately since our insurance is good. I guess we are lucky

living in a large urban

area.

Elinor

[Guest guest]

That's better then what happened to me. I checked in to my appointment and they

had me down as dead. LOL drove three miles but they let me in...sad to say every

one was in a hurry so it wasn't a good day.

Geri

[Guest guest]

Drove three hours......... not three miles!

That's better then what happened to me. I checked in to my appointment and they

had me down as dead. LOL drove three miles but they let me in...sad to say every

one was in a hurry so it wasn't a good day.

Geri

[Guest guest]

No, I never had a breast exam at the MDA clinic, but then...

If you are really interested in changing the Clinic's attitude, go after their

money.

Three Steps in any order.

1. Write a letter to the National MDA describing the treatment you received and

send a copy of the letter to your local newspaper with a cover letter as to why

you sent the letter.

2. Send a copy of the letter to your congressman, or take it to his local office

and discuss the issues with him or his factotum. MDA gets HHS grants for

research and really don't need any negative PR.

3. Send/take the letter to your local United Way office. This should really

bring local pressure on local chapter as they do receive United Way money and

would like to keep getting it.

With any dispute, raise your voice to funding sources, and results usually

happen.

Regards.

Larry