Re: fresh muscle biopsies/Lois

[Guest guest]

Hi Lois,

My son has his muscle biopsy done in Atlanta and I have to say that the whole

process was very smooth and that the docs and staff took excellent care of my

child and my family. Asher was dx by Shoffner with Mito, Complex III defect - it

was only detected b/c of the enzyme analysis that was done with the fresh

mitochondria - Thus, a frozen biopsy would have continued to leave Asher

undiagnosed. It did take a long time to wait for the results (4 months)- but, if

I had to do it all over again, that's where I'd go for sure. I think he is

excellent at doing biopsies regarding mitochondrial disorder.

HTH,

Anne R

[Guest guest]

Lois,

Where are you in Florida? I live in South Florida and had the docs also say that

they could figure out how to do a fresh muscle biopsy if Asher needed one.....

that made me turn and RUN! I do not want anyone say they can figure out how to

do one... I wanted an expert who had done many many many so that we wouldn't

have to repeat it!

Anne R

[Guest guest]

If Dr. Shoffner is closer to you and your insurance is accepted by his office, he is a good choice. If they do not accept your insurance, they will ask for a large payment up front. that may be the time you consider goingsome place else.

Be sure you get copies of all reports from Shoffner's office upon completion of all testing. Then again, that goes for anything you have done anywhere. It is always better to manage all records yourself. That way, if you need to go some place else, you have it all in one place.

Also, I have heard the time to get an appt with Shoffner is faster than the with Dr. Cohen. That is only hear say.

Good luck

rosy

[Guest guest]

Anne,

I am near Daytona, we go to Orlando for most of Leighann's specialists

though. I definately agree with you on the guesswork. We are not going to

attemp the biopsy until we get to someone that has had a lot of experience

and knows the difference between fresh and frozen. Have you ever been to

Dr. Cinimi (I think thats spelled right), in Melbourne? He's a pediatric

neuro that's doing a fellowship in genetics, UMDF told us about him. Hes

supposed to be good. Thanks for sharing with us!

Lois

> [Original Message]

>

> To: <Mito >

> Date: 2/16/2005 6:22:55 AM

> Subject: RE: Re: fresh muscle biopsies/Lois

>

>

> Lois,

>

> Where are you in Florida? I live in South Florida and had the docs also

say that they could figure out how to do a fresh muscle biopsy if Asher

needed one..... that made me turn and RUN! I do not want anyone say they

can figure out how to do one... I wanted an expert who had done many many

many so that we wouldn't have to repeat it!

>

> Anne R

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Rosy,

Thank you for your help! Atlanta is definately closer to us. I have gotten a lot of info from you guys about Dr. Shoffner, I'm going to start checking into getting the insurance question answered. Thanks about the advice on the copies of reports, we learned the hard way, we got copies of records to get a second opinion for her neuro, and thats how we found out the diognosis, it was all over the reports, it showed test results and EEG's that were abnormal, but we had been told were normal. We were under the impression that they were no closer to figuring things out than they were in the beginning! They kept EVERYTHING from us. We read the reports and diognosis and marched right into our next appointment and demanded that they explain these reports. They did, but now we know to get copies of everything as we go. Needless to say were trying to find a decent neuro!

Thanks,

Lois

Re: fresh muscle biopsies/Lois

If Dr. Shoffner is closer to you and your insurance is accepted by his office, he is a good choice. If they do not accept your insurance, they will ask for a large payment up front. that may be the time you consider goingsome place else.

Be sure you get copies of all reports from Shoffner's office upon completion of all testing. Then again, that goes for anything you have done anywhere. It is always better to manage all records yourself. That way, if you need to go some place else, you have it all in one place.

Also, I have heard the time to get an appt with Shoffner is faster than the with Dr. Cohen. That is only hear say.

Good luck

rosyPlease contact mito-owner with any problems or questions.