Re: Awaiting Diagmosis - Fresh vs Frozen

[Guest guest]

Hey Janet ! I spoke with you in chat the other day. Glad you found

the message board. UM starts with a frozen sample usually because

it's a lot cheaper to do and sometimes provides the info they need.

It's a needle biopsy (puncture wound) vs a fresh sample which is

taken usually from your thigh, upper arm or occasionally your calf.

The fresh sample is done at UM by the Neurosurgery Dept. and

requires about a 2 inch incision. They did this for me after 3

needle biopsies were abnormal, but also inconclusive. Some people

can be diagnosed with the needle biopsies, but adults,(according to

Dr. Cohen at Cleveland Clinic) frequently need the open muscle

biopsy for diagnosis. They don't typically do the open biopsies on

kids because they are much more invasive and require the child to be

under anesthesia. For adults, they only gave me a topical

anesthetic because supposedly numbing the whole area can give false

results. I believe they gave me a little valium and it was still

quite painful.

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