Re: Re: Athena Labs / c-pap

[Guest guest]

It is the lab that is important, not who actually does the surgery. If

the lab is set up to do fresh, they can test for more things than a

frozen bx could be tested for. The take the fresh sample and run down

to the lab and start harvesting mitochondria. Chemical reactions don't

occur after the sample is flash frozen.

klaga5 wrote:

>

>Laurie,

>Thanks, I'll wait and see what happens. I probably won't agree to

>another biopsy in St Louis if I don't get a specific dx this time

>around. If that happens, I'll have to figure out what to do, maybe

>go to Cleveland. I hope I won't have to. My internist here, said

>she knows someone who does good biopsys. If it has to be sent out

>anyway, maybe that's an option. So does Cleveland have the best

>lab, or Atlanta, or somewhere else?

>

>I just got a c-pap machine today. It'll be an interesting night.

>The sleep study says I stop breathing every 5 minutes for around 20

>seconds, arouse every 2 minutes, and my oxygen saturation gets down

>to 90%. I never got into deep sleep. They consider this mild

>obstructive apnea. I'm afraid fighting the machine on the exhale is

>going to exhaust me, and make me feel weaker. It does sound like if

>I fail this, they may approve bi-pap instead.

>Kim

>

>

>>>>

>>>>

>>>>That's why I wonder if I may have mito (or MELAS). They always

>>>>assumed I had a stroke in college, some 20 years ago. Again 2

>>>>

>>>>

>1/2

>

>

>>>>years ago they had to rule out stroke. With the new technology,

>>>>they could tell I've never actually had a stroke. I've had

>>>>absolutely terrible sharp pains in my head on and off as long

>>>>

>>>>

>as I

>

>

>>>>can remember. I've even had my right hand, arm, and side of my

>>>>

>>>>

>>>face

>>>

>>>

>>>>go numb for weeks. I have a couple calcifications on my MRI

>>>>

>>>>

>>>also.

>>>

>>>

>>>>

>>>>

>>>>----------

>>>>

>>>>No virus found in this outgoing message.

>>>>Checked by AVG Anti-Virus.

>>>>Version: 7.0.300 / Virus Database: 266.5.7 - Release Date:

>>>>

>>>>

>3/1/2005

>

>

>>>>

[Guest guest]

Kim

If you want OX PHOS testing done to determine what complex(es) are involved,

you will have to go to one of the few places that do fresh biopsies. That is

the only way I was diagnosed. Nothing else showed the mito. It might be

different now that I have progressed.

laurie

>

> Reply-To:

> Date: Thu, 03 Mar 2005 04:39:34 -0000

> To:

> Subject: Re: Athena Labs / c-pap

>

>

>

>

>> Kim

>> If your C-PAP machine has a ramping feature, use it.

>

> Ya it does. I probably will use ramping because I need time to try

> to adjust to it.

>

>> I wish you luck tonight.

>

> Thank you.

>

>> I hope you get the information that you need from the biopsy you

>> have already had.

>>

>> laurie

>

> Thanks, I do to. I supose if another one has to be done, St Louis

> could do it if they'd send it to a lab with a better reputation.

> I'm still praying for a diagnosis in the next 4-6 weeks though.

> Kim

>

>

>

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

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> responsibility to evaluate the content of the postings and consult with their

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>

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>

[Guest guest]

Kim

If you want OX PHOS testing done to determine what complex(es) are involved,

you will have to go to one of the few places that do fresh biopsies. That is

the only way I was diagnosed. Nothing else showed the mito. It might be

different now that I have progressed.

laurie

>

> Reply-To:

> Date: Thu, 03 Mar 2005 04:39:34 -0000

> To:

> Subject: Re: Athena Labs / c-pap

>

>

>

>

>> Kim

>> If your C-PAP machine has a ramping feature, use it.

>

> Ya it does. I probably will use ramping because I need time to try

> to adjust to it.

>

>> I wish you luck tonight.

>

> Thank you.

>

>> I hope you get the information that you need from the biopsy you

>> have already had.

>>

>> laurie

>

> Thanks, I do to. I supose if another one has to be done, St Louis

> could do it if they'd send it to a lab with a better reputation.

> I'm still praying for a diagnosis in the next 4-6 weeks though.

> Kim

>

>

>

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>