Kent

[Guest guest]

Kent,

There are only a few facilities in the United States that are capable of doing a

fresh muscle biopsy and running all the appropriate tests on it. One is

Cleveland Clinic in Cleveland, and I am not sure where the others are.

kent thegaffer23@...> wrote:

thanks Laurie, Barbara and Hazel for your info and encouragement.

so it seems i need to talk to the doc doing the biopsy about enzyme

assays on a fresh sample as well as COX, SDH and gamouri staining.

does that sound right? is there a good pathologist here in illinois?

kent

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[Guest guest]

I decided two years ago to go to Atlanta for my fresh muscle biopsy,

although I'm only 50 miles away from NYC.

My only knowledge of whether they do fresh biopsies at C-P is from 2

years ago, when a lab tech there said " the sample is flash frozen,

there is no need to test fresh muscle " . Things may have changed

though, or maybe they are so far beyond the other groups doing the

testing that they can use frozen muscle.

My experience in Atlanta was VERY positive, which was important to me

and my family, as I dragged them all there and was pregnant at the

time. Angel Flights was available, as was the local Mac

House if we couldn't afford a hotel. The area (northeast side of

Atlanta I think?) has several hospitals, and the hotels are used to

housing people who are recuperating.

The scheduling for the testing in Atlanta was pretty quick, available

within a month, but I had to delay the testing a few months for

insurance and scheduling travel. The downside was that I still don't

have genetic testing results, but the mito disease results were

received at eight weeks on the dot.

Take care,

RH

> > thanks Laurie, Barbara and Hazel for your info and encouragement.

> > so it seems i need to talk to the doc doing the biopsy about

enzyme

> > assays on a fresh sample as well as COX, SDH and gamouri staining.

> > does that sound right? is there a good pathologist here in

illinois?

> > kent

[Guest guest]

I decided two years ago to go to Atlanta for my fresh muscle biopsy,

although I'm only 50 miles away from NYC.

My only knowledge of whether they do fresh biopsies at C-P is from 2

years ago, when a lab tech there said " the sample is flash frozen,

there is no need to test fresh muscle " . Things may have changed

though, or maybe they are so far beyond the other groups doing the

testing that they can use frozen muscle.

My experience in Atlanta was VERY positive, which was important to me

and my family, as I dragged them all there and was pregnant at the

time. Angel Flights was available, as was the local Mac

House if we couldn't afford a hotel. The area (northeast side of

Atlanta I think?) has several hospitals, and the hotels are used to

housing people who are recuperating.

The scheduling for the testing in Atlanta was pretty quick, available

within a month, but I had to delay the testing a few months for

insurance and scheduling travel. The downside was that I still don't

have genetic testing results, but the mito disease results were

received at eight weeks on the dot.

Take care,

RH

> > thanks Laurie, Barbara and Hazel for your info and encouragement.

> > so it seems i need to talk to the doc doing the biopsy about

enzyme

> > assays on a fresh sample as well as COX, SDH and gamouri staining.

> > does that sound right? is there a good pathologist here in

illinois?

> > kent