The Never ending Biopsy Debate

[Guest guest]

The great thing about shoffner is you get a copy of your visit notes within a few days of getting back home...then once he has the diagnosis you get a 40-60 page report in the mail...so you get copies of EVERY paper and thats great!

With Cohen, most of my friends got verbal or emailed results much sooner but they have a lot of problems with administrative things like getting copies of reports and having appointments cancelled.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.com

[Guest guest]

Hello all,

I have a question on the biopsies that ppl have had done.

With out many answers still the next option for myself is

to have a fresh biopsy done. I believe that I will get one

at this stage. Rheum. and Endocrine Docs haven't found

anything and the frozen biopsy got so messed up no one

can seem to agree if I am truly diagnosed or not. AGHHH!!

So here is the big question......

Where to have it done..... Cleveland or Atlanta

I have the opportunity if I go to Atlanta to stay with friends.

Otherwise I live 4 hours from Cleveland and very little support.

But who does the most comprehensive work up? If I am going

to go through another surgery, I want the most information back

out of it all. From what I hear, Shoffner is very comprehensive

in his testing and biopsy work ups. Is Cleveland just as thorough?

Do they do all the pre biopsy work up like shoffner?

Any and all thought on the matter would be most appreciated.

You all have given our family so much, I feel like I can't thank you

enough.

Hope and Health,

AnnMarie-

Complex IV (depends on who you ask ... hahaha)

Married

to my best friend Rick, mom of (14), (11), Cassandra(5 1/2)

and Joe(4) - complex IV, lactic

acidosis, CP, tethered chord syndrome,

dysautonomia, and a smile that never quits :-)