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I agree, and I also got the feeling she felt I was insulting her

intelligence. My position remains strong.....if I felt the kids's FP doc

and CNP had more knowledge about TSC than me, I would be happy to let them

do the research, but the longer I am in this TSC group...I see a common

thread...a great deal of healthcare providers (Dr.s and nurses) have very

little knowledge about TSC and seem completely disinterested in learning!!!!

What happens to the patient/child with no advocate? Sometimes I just get

fuming mad! I need to calm down before Mon. because if I make her (Marilyn,

the CNP) mad again...I just know she won't order Macy's MRI!

> So in other words she feels like you are better off not knowing If Macy

has the same problem. Be sure it would be different story if it was her

child.

>

>

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  • 3 weeks later...
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It's amazing...What did people do before the internet?! I don't know what

life would have been without it..

-- research

I agree, and I also got the feeling she felt I was insulting her

intelligence. My position remains strong.....if I felt the kids's FP doc

and CNP had more knowledge about TSC than me, I would be happy to let them

do the research, but the longer I am in this TSC group...I see a common

thread...a great deal of healthcare providers (Dr.s and nurses) have very

little knowledge about TSC and seem completely disinterested in learning!!!!

What happens to the patient/child with no advocate? Sometimes I just get

fuming mad! I need to calm down before Mon. because if I make her (Marilyn,

the CNP) mad again...I just know she won't order Macy's MRI!

> So in other words she feels like you are better off not knowing If Macy

has the same problem. Be sure it would be different story if it was her

child.

>

>

Not Medical Advice. We Are Not Doctors.

Need help with the list? Email kathy@...,michelle@tetheredcord

com, rick@...

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