Re: Testing and Fees

[Guest guest]

Rita,

Ask Athena Diagnostics about their " Patient Assistance Program " to

help with the costs of the genetic testing. Yes, I still believe

Athena is the only commercial lab with the patent for the CMT tests.

There are genetic testings going on for research purposes, perhaps you

can check out geneclincs.org and maybe have your son tested that way.

Did you son have the EMG/NCV tests? What did the results show from

that? An MRI of the brain may or may not show white matter lesions in

a person with the Type X's.

~ Gretchen

[Guest guest]

My son was given the genetic tests through Athena without us knowing the

insurance situation or the costs. Now, we have bills of $6,000. We are looking

into patient advocacy since we incurred a cost not knowing the extent.

Dennis

[Guest guest]

Hello Dennis,

There are so many DNA known sites now for diagnosis it can get pricey

if they go hunting.

It is strange that after classifying CMT by symptoms unclearly and now

having a wonderful analysis tool from DNA that we now have to look at

symptoms again to try to limit cost of DNA testing by excluding some

forms. It's almost like having to go back to the drawing board and yet

many in the medical profession think CMT a very obsure disease.

EdM from NH

[Guest guest]

Gretchen,

Athena's patient assistance program still requires a payment of $1200.

The MRI showed white matter on the brain. He will be given a follow up MRI in

December to see if there have been any changes.

There is another case study of a boy with the same type of episode. My boy's

brain MRI was a perfect match to the one in the case study. Our physician said

it was as if you had pulled the MRI off the page and he was holding it. Anyway,

in that case study, the white matter resolved on it's own. I do not know what

happened to the boy in the study. The study was a couple of years old.

The July " episode " was scary, & in a nut shell, it looked like my boy was having

a stroke. He went numb all over, the side of his face drooped, slurred when

trying to talk, hand curled up. Off & on for three days. Then like a flip of a

switch it will all go away pretty much back to " normal " .

He has the high arched feet. The horrible handwriting. Not much into sports.

I am actually his biological grandmother and have moderate to severe

polyneuropathy based on NCV/EMG studies. I do not think they could get my small

finger to give a reading. I have the high arch feet. My right foot feels numb

and the arch of my foot feels like it has cardboard in it. I could not feel the

tuning fork if that means much of anything.

My boy's EMG/NCV studies showed mild slowing in the upper and lower extremities.

I am glad to say that all the nerves did give a response.

It's hard not knowing what might happen.

The doctors do not have much to tell us as they say the type of CMT my son has

is very, very rare. We do not know when or if he will have another episode. The

boy in the case study went two years between episodes.

Thank you for your reply. I will try to check out the research side.

Rita

[Guest guest]

Hello Rita,

The July " episode " was scary, & in a nut shell, it looked like my boy

was having a stroke. He went numb all over, the side of his face

drooped, slurred when trying to talk, hand curled up. Off & on for

three days. Then like a flip of a switch it will all go away pretty

much back to " normal " .

Did anyone mention Bell's Palsy? This is very mysterious how it comes

and goes.

EdM from NH