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Re: Lost and I need help

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If you have an appoitment in Cleveland, I would really try to make it. Dr.Cohen is very honest, and I do believe what he tells me about our daughter. He will be blunt and tell you whats on his mind, rather it be mito or not. If it is not mito, he may be able to lead you into another direction. CCF is also very good with payment arrangements. The most expenive thing would be the muscle biopsy, but if that is already done take the reports with you. You can also request all of her previous bloodwork, so you won't have to double test.

We live in the Cleveland area, and use CCF for our entire family's medical needs. We have had lapses in insurance and have never been not seen, due to lack of insurance. To be totally honest my two older girls (from a previous marriage) have outstanding bills in the thousands, since my ex husband neglects to pay them. We still have no problem getting medical care for them.

Best wishes

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I would NOT go to Cleveland unless your appt is with Cohen. Anything other

than a fresh muscle biopsy is about 50% accurate (or less). I am unsure of

the stats with fresh biopsies but don't believe that they are totally accurate

either.

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Hi ,

I have an eight year old daughter, diagnosed with mito complex one

by fresh muscle biopsy. She has mostly GI issues, lower resulting in

cecostomy (mickey in cecum to irrigate) done in Boston. She had her

first lower motility test there in Pitts with DiLorenzo, we live in

DE and they were the closest.

Would be happy to compare notes, here's my email address.

Judy

jimnjudyweeks@...

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