nih neuro / ms / sm responce

[Guest guest]

A wonderful woman called back in responce to my inquiry about that ms

statement on their page i posted a few days ago . it is ment to be within the

context of the sentance before the one with sryingomyelia , used as a

diferinatal daignoses among the rest in the second sentance .

she talked to at some great lenght , and it want to share bits of the

conversation . '

snip ---on research , she said she was suprised , yet not suprised , no

reasearch has been done in awhile ....no doctor has come to them with a

proposed study , ( i forgot to ask if dr oro might have recently ) ....

she says if someone is intrested in doing a study , they should get in touch.

so i guess is time to ask all our doctors , if they wouldn't want to

participate in some research , together , by sharing patient data , it would

start to clarify the differnet types of chiari / sm ,.....intervention options

and treatment outcomes .

each of us to submit to a few more tests , like neuorpsych and pet scans , ect

..

speaking of which , there is another topic , we discussed of some intrest .

the mrs machines :-)

im gonna go jump the web , now trying to find more to add to what she said ,

wish me happy portholes......sarah in paradise

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