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Lynda,

Vaccine reactions can appear at any time during life, and those

reactions will go to the weakest genetic link.

Also, whatever the weakest genetic link may be from the parents,

grand-parents, etc., at the time of conception from vaccines and

vaccine damage will also appear in the child.

We know that vaccines attach to the DNA of the host, and we know

that in dogs that it takes anywhere from 3 to 5 generations to clear

vaccine damage. It is only then that one will know what is actually

genetic and what is vaccine damaged genetics. So there is no way a

human would ever see long-term what they do or don't do.

Jackie Noel

www.sagaciousairedales.com

www.sagacousdogcountry.com

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Muscular dystrophy is an inherited problem - my cousin has it -

inherited from his mother (a distant aunt to me) who is a carrier.

It's mainly in boys - the type of problem that girls/women are

carriers and only pass on to their sons. That's the way I

understand it anyways

Caroline

> Does anyone know if there has ever been any research or possible

link of Musular Dystrophy and vaccines? I have been watching the

telethon and they mentioned more than once that it comes out of the

blue to perfectly healthy individuals. They are now talking about

numerous " neuromuscular diseases " on the telethon.

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  • 2 years later...

Simone,

We live in KC and have never seen our local MDA clinic (long story) but we saw

Dr. Bach when Brett was diagnosed 4-1/2 years ago and he is an MDA doctor- so

whenver we need services, we just call Bach and he sends a letter to the local

office and we get what we need. SO, I think once you are evaluated once you are

eligible for services. But this is only our experience. Good luck!

Kristal

Mom to Brett- SMA II- 6 years old

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

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

MDA Question

I was just wondering how many of you use MDA benefits but have your

own Neurologist. I have been seeing MDA neuros since I was a kid, but

since I moved up here the Doctor has his intern look at me and I maybe

see my Neuro for 5 minutes if I'm lucky and they do the same basic

stupid reflex tests and junk. It makes me feel like they think I'm

gonna die anyway so why waste their time, ya know? Anyway, recently I

was sent to another Neuro for Migraines because my MDA neuro couldn't

squeeze me in for two months (what a shock), she seemed surprised that

my MDA neuro never requested a PFT or an EKG on me ever. When I

explained what had been going on, she offered to do my followup for

SMA as well as my headache management. Will I still be eligible for

stuff like wheelchair repairs and such if I change Neuros?

Simone

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Thanks for the help, I'm just really tired of being

treated that way. So, hopefully things will work out

and I'll get to keep this new neurologist.

Simone

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Website: http://www.geocities.com/sunshine9573

" Character cannot be developed in ease and quiet. Only through experience of

trial and suffering can the soul be strengthened, vision cleared, ambition

inspired, and success achieved. "

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Yes, you can still get other benefits such as wheelchair repair. I

haven't seen an MDA neurologist in years.

L

Simone wrote:

> Will I still be eligible for stuff like wheelchair repairs and such if

> I change Neuros?

>

> Simone

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Good luck with the new neurologist, Simone. I actually didn't use my

MDA clinic between the ages of 14-36, and have only gone there 2x in

the last 3 years. I'm sure it has a lot to do with what type of

insurance one has and if there are specialists nearby, but I've been

able to use my Medicaid, and later add in an HMO, along with a

general practitioner to order most of my medical equipment over the

years including wheelchairs.

Occasionally I am referred by my GP to a pulmonologist for ventilator

settings. The wheelchair vendor's in-house OT helped with ordering

my chair and my GP signed off on it. I got a referral from my GP to

see a urologist and an infectious disease specialist when those

issues became pertinent, and I get a prescription to see an orthotist

when my body jacket needs work.

The MDA clinic was very helpful when I was young and trying to figure

out what I need, but now I only use it for highly specialized things

like trouble with swallowing specifically due to a neuromuscular

disease. I didn't even use the clinic when I went on a ventilator;

my local pulmonologist and the hospital RT staff did fine work

assessing me and setting up my equipment. I had a fair amount of

trouble with the MDA neurologist thinking my health care priorities

should be different than what mine are, though, she did give me two

very good referrals. I hear she's moved on. Maybe I'll feel better

respected by the new one if I ever go there for services.

As for paying for things, MDA has paid for 1/2 a wheelchair ramp.

When I requested headlights for my wheelchair, they denied them

because they weren't medical equipment. I'm lucky Medicaid has paid

for the medical equipment I've needed, and I know this is different

in every state.

Alana

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