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Re: (biopsy issue)

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Since you spoke to Dr. Whiteman about this, I would be curious if he

mentioned fresh versus frozen to you, as we use him for our families issues.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting...

Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: Negative frozen biopsy

> ,

>

> Will your insurance pay for either Cleveland or Atlanta? If so, I would

> go

> there. I spoke to Dr. Whiteman (Mayo) at the Pittsburgh conference and

> gave

> him a list of my son's symptoms. They include:

>

> uncontrolled migraine

> tremor (intermittent)

> dysautonomia (temp control probs, syncope, near- syncope, orthostatic

> hypotension, ,etc)

> abdominal pain

> ?GERD (no Nissen)

> periphrial neuropathy

> joint pain

> asthma

> cognitive changes (short term memory loss)

> periodic vision changes

> absence spells (without EEG changes)

> bleeding problems

> mood problems

> fatigue

>

> Anyway, within five minutes Dr. Whiteman said, " You've convinced me. I'd

> take him to Cohen and get a fresh biopsy. " He said that that is what he

> would

> do first. It took us a year to get into Cleveland.

>

>

> Your problems with frozen biopsy and problems I've heard that other have

> made me convinced that we wanted no part in frozen biopsies. I have

> refused

> to consider one even though our docs have been pretty insistent.

>

>

>

>

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

>

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> Since you spoke to Dr. Whiteman about this, I would be curious if he

> mentioned fresh versus frozen to you, as we use him for our families issues.

He told me that if we saw him he would send us to get a fresh biopsy. I also

heard a talk with Bill Rhead and he also said that fresh is best.

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