LGMD 1A Dominant

paper (Nov 14, 2009 9:16:19 PM)
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CRIS (Nov 14, 2009 9:22:30 PM)
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cherie (Nov 14, 2009 9:24:17 PM)
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cherie (Nov 14, 2009 9:24:50 PM)
HELLO

CRIS (Nov 14, 2009 9:25:20 PM)
hi cherie

cherie (Nov 14, 2009 9:25:25 PM)
I AM HAVING A PROBLEM VIEWING REMARKS AGAIN

CRIS (Nov 14, 2009 9:26:02 PM)
what do you mean?

cherie (Nov 14, 2009 9:26:27 PM)
I Hve been pretty good lately

CRIS (Nov 14, 2009 9:26:56 PM)
thats good....how is your mother?

cherie (Nov 14, 2009 9:27:39 PM)
ok, doing tooo much , trying to do things for me she doesnt have to , i can do it, although slowly

cherie (Nov 14, 2009 9:28:31 PM)
i went to the mdaa clinic on thursday

cherie (Nov 14, 2009 9:29:23 PM)
he said i am holding my own with me, but he cut back on Myasthenia gravis meds and upped parkinsoon;s meds

cherie (Nov 14, 2009 9:29:35 PM)
MD

cherie (Nov 14, 2009 9:30:43 PM)
BUT HE SAID THAT PAIN ISN'T USUAL IN MD AND SAID IT WAS PROBABLY ARTHRITUS ALTHOUGH IT DIDN'T SHOW UP ON XRAYS

cherie (Nov 14, 2009 9:31:07 PM)
HE SAID TO SE MY PRIMARY CARE FOR HE PAIN

cherie (Nov 14, 2009 9:32:56 PM)
I HAVE BEEN LUCKY LTAELY, I WON A BASKET AT A CHURCH RAFFLE WITH T WO BOTTLES IOF WINE, I DON'T DRINK L OL

CRIS (Nov 14, 2009 9:33:04 PM)
what kind of pain are you having....I just have pain when I stand in one place too long

CRIS (Nov 14, 2009 9:33:32 PM)
save the wine for company and cooking....lol

cherie (Nov 14, 2009 9:33:33 PM)
tHEN MY HAT WONE IN A HALLWOEEN HAT COSTUNE ANOTHER BOTTLE OF WINE

CRIS (Nov 14, 2009 9:34:14 PM)
if you go visiting, take a bottle of wine....they will appreciate it

cherie (Nov 14, 2009 9:35:44 PM)
THEN I WENT TO AN ANNUAL MEETING OF THE MYASTHENIE GRAVIS OUNDATION AND TH EY HAD A GIFT BASKET RAFFLE FOOD BASKET WICH INCLUDED TWO BOTTLES OF WINE, I THINKSOMEOE IS TRYING TO TELL ME SOMETHING

cherie (Nov 14, 2009 9:36:06 PM)
SORRY ABOUT THE TYOS I AM HAVING DOUBLE VISION AGAIN

cherie (Nov 14, 2009 9:36:08 PM)
'

cherie (Nov 14, 2009 9:36:57 PM)
I TALKED TO SOMEONE ELSE WITH MYOFIBRILLAR MYOPATHY, THE ONLY PERSON I HAVE EVER ME T

CRIS (Nov 14, 2009 9:37:00 PM)
I don't drink either....need all my senses

CRIS (Nov 14, 2009 9:37:37 PM)
what did they say?

cherie (Nov 14, 2009 9:38:34 PM)
ME TOO, I ONCE HAD A DRINK AND A HAVE AFTER WORK W ITH M OSS AND THEY ASKED IF I WAS OK , I SASID YES BUT MY NIPS WERE LUMB, LOL

CRIS (Nov 14, 2009 9:39:15 PM)
you mean your lips were numb....love the mistype

cherie (Nov 14, 2009 9:39:27 PM)
THE MFM PERSON SAID DID I TALK TO A DR. IN THE MAYO CLINIC,

cherie (Nov 14, 2009 9:39:35 PM)
THAT IS WHAT I ACTUALLY SIAD

CRIS (Nov 14, 2009 9:39:49 PM)
lol

cherie (Nov 14, 2009 9:40:15 PM)
THAT WAS ONLY THE SECOND AND THE LAST DRINK I EVER HAD

CRIS (Nov 14, 2009 9:41:28 PM)
have you ever been to the mayo clinic?

cherie (Nov 14, 2009 9:41:51 PM)
THE MAYO CLINIC DR WAS ONE OF THE DRS WHO HASS BEEN WRITING ABOUT MFM AND HAS WRITTEN ALOT OF PAPERS ABOUT DISCOVERING THE A=ZASP GENE, NO

cherie (Nov 14, 2009 9:42:11 PM)
I SENT AN EMAIL LAST NIGHT AND INTRODUCED MY SEELF

cherie (Nov 14, 2009 9:42:45 PM)
I DONT KNOW IF I WILL HERE FROM HER OR NOT

cherie (Nov 14, 2009 9:42:56 PM)
MAYBE I WILL SINCE THERE ARE AO FEW OF US

CRIS (Nov 14, 2009 9:42:59 PM)
I hope they respond to you

cherie (Nov 14, 2009 9:43:14 PM)
THE STUDY THEY DID WAS WITH 63 PATIENTS OVER 30 YEARS

cherie (Nov 14, 2009 9:44:15 PM)
I ASKEDE HIM IF HE WAS IN ALOT OF PAIN HE SAID YES

cherie (Nov 14, 2009 9:45:20 PM)
I ALSO ASKED HIM ABOUT EXERCIE VS REST AND HE SAID THT THRPOUGH MAYO THEY HAED TOLD HIM THAT WE WERE NOT SUPPOSD TO OVEXERRT

cherie (Nov 14, 2009 9:45:51 PM)
BECAUSE OUR MUSCLES WERE LIKE RUBBERBADNS THAT DIDNT GO BACK.

cherie (Nov 14, 2009 9:46:40 PM)
I HAVE BEEN TRYING TO DO ALOT OF STRETHCING EXERCISES, IF I DID EVERYTHING THEY GAVE ME IT TAEKS OVER AN HOUR TO DO THEN

cherie (Nov 14, 2009 9:46:59 PM)
BUT THEN ON SOMEDAYS IT TAKES ME TO DAYSS TO GET VOER IT

CRIS (Nov 14, 2009 9:47:06 PM)
I am afraid to exercise because I feel weak afterwards and feel I could fall...not a good thing for me being alone

cherie (Nov 14, 2009 9:47:10 PM)
OTHERDAYS IT SEEMS OK

cherie (Nov 14, 2009 9:48:40 PM)
I DO ALSO,

cherie (Nov 14, 2009 9:49:06 PM)
I HAVE MORE AND MORE TROUBLE TRYING TO GET OUT OF THE CHAIR

cherie (Nov 14, 2009 9:49:28 PM)
MY NEURO SSAYS DO AS MUCH ERCISE AS TOLERATED

cherie (Nov 14, 2009 9:50:01 PM)
BUT SINCE I AM THE ONLY PERASON WITH MFM HE DOESN'T REALLY UNDERSTAND ABOUT IT

cherie (Nov 14, 2009 9:50:20 PM)
I KNWO THE PAIN I AHAVE AFTER WARDS IS NOT ARTHRITIS

cherie (Nov 14, 2009 9:52:40 PM)
WELL GOOD NIIGHT BEFORE WE GET KICKED OFF

CRIS (Nov 14, 2009 9:53:26 PM)
good nite cherie....it was nice chatting with you

CRIS (Nov 14, 2009 9:53:47 PM)
take care of yourself and keep smiling

cherie (Nov 14, 2009 9:54:13 PM)
I DO THANKS YOU TOO

CRIS (Nov 14, 2009 9:54:29 PM)
will do

CRIS (Nov 14, 2009 9:54:33 PM)
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cherie (Nov 14, 2009 9:54:46 PM)
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