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In a message dated 07/30/2002 2:40:47 AM Eastern Daylight Time,

bdwwt1@... writes:

> Anyway, just wanted to say hi, I'm not usually this down and I'm sure I'll

> be up soon....... and I look forward to talking with you....

Welcome, Bonnie. I hope you find the members of this group to be as caring,

helpful, informative, and supportive as I have.

{{{And Pain-free Wishes}}}

Carol

" In the little decisions of life, use your mind; in the big decisions, use

your heart " [author unknown]

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Hi Bonnie,

I have a friend who also has Thorasic Outlet. She recently had the surgery

and also went thru a 6 week live in pain clinic. Altho she will always have

pain to some degree (we all know how that goes) she says the whole experience

has changed her life for the better. It took a very long time just to get

the surgery. I understand that the surgery is a risky one.

Any way welcome to our group. I hope you will find the support, information

and compassion that I have experienced in the last 4 years. It has been a

real live saver for me.

Kathleen in Calif.

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  • 5 years later...

Hi Carol, so glad to hear that you are resting…even if you can’t help it

<sigh>. Good luck getting a doc to do the proper tests. If you check out the

“Canadian Consensus Document for the Diagnosis and Treatment of ME/CFS” you

will get an idea of the kinds of tests that should be done…you can just

Google this…or I can send you a copy offlist…I have it on my computer. You

can see that there is a lot of differential diagnostics…screening for other

disease…did your doc even check simple things like your thyroid, iron etc.?

There are so many things that could be responsible. Good luck dear. Aylwin

xox

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  • 1 year later...
Guest guest

Hi everyone! I am new to the group and wanted to introduce myself. My

name is , I am 30 yrs old and live in Alabama. I have a 6 year old son and

a 16 month old daughter. Both have Congenital Bilateral Perisylvian Syndrome.

My son also has Lennox-Gastaut Syndrome (one of the worst forms of epilepsy),

mild CP and mental retardation. He is not potty trained, has some feeding

issues and is non-verbal. We are in the works for setting up surgery to get a

VNS to help control his seizures.

I look forward to getting to know all of you and your stories. It feels

good to know there are other people out there who know what you are going

through. :)

Thanks,

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