Re: App with Dr. Shoffner

[Guest guest]

Hi, My younger son was first diagnosed with CP also. My two sons had

muscles biopies on 12/18/2003 and we did not get a final response

until March 25, 2003. It is hard to wait, but sometimes the muscle

samples go out to several different labs..

Hang in there...

Marie

> Hi, my name is Krista I have a son who is five and we were told in

> 2000 that he has CP and has abnormal white matter and two years

ago

> we found out that it is progressive and most of the damage was in

the

> cerebellum. That's when his nero told us that she thought it was

> Mito. We did a muscle byopsy that summer in Grand Rapids MI(june

of

> 2002)and it took a year to get everything back. It told us

nothing.

> (it was frozen) The doc's then said that they were going to send

> everything to Dr. Shoffner. We saw Dr.Shoffner in December and did

> another muscle byopsy he told us that it would take 8 to 12 weeks

for

> the results from his muscle byopsy to come back. I'm sure you all

> have felt the same way but it will be 13 weeks on the 17th of

April

> and I am checking the mail hoping to get something or when the

phone

> rings I hope that it might be his office wanting to make an appt

to

> come back and talk with him about the results. My question to any

> body who wants to respond is, how long did you wait and how were

you

> contacted by Dr. Shoffner? Was it by phone, mail, or through your

> local nero. Should I be calling by now to see how things are

> progressing or should I wate? I really hope that it doesn't take

> another year to get stuff back from the labs. He also wanted to

look

> into a couple of other degenerative disease. Is there anyone that

> can help me with this?

>

> Thanks so much.

>

> Krista

> Mother of Skyler (5) not yet diagnosed