Myasthenia Chat
gypsy (Dec 18, 2007 8:07:21 PM)
sierra (Dec 18, 2007 8:07:21 PM)
BJ I need u to send me yours I didn't have it did u gals get my email?
txs-sweety (Dec 18, 2007 8:07:22 PM)
yes jan i did thanks i enjoy reading it
sierra (Dec 18, 2007 8:07:28 PM)
hey gypsy so happy to c u
txs-sweety (Dec 18, 2007 8:07:32 PM)
hi gypsy how are you
txs-sweety (Dec 18, 2007 8:07:54 PM)
i have a cat that thinks yippppeeeeeeee mommy brought a tree in for me to climb
Beejay (Dec 18, 2007 8:08:00 PM)
hi gypsy good to see you
Beejay (Dec 18, 2007 8:08:16 PM)
i love cat decorations lol
jac (Dec 18, 2007 8:08:43 PM)
(This user has entered Myasthenia Chat)
sierra (Dec 18, 2007 8:08:48 PM)
because I have been under thed weather for quite a while dnow, I have been so behind with all this wrapping, decorating, etc.
gypsy (Dec 18, 2007 8:08:52 PM)
hi sierra, txs, beejay
sierra (Dec 18, 2007 8:08:52 PM)
hi JAC welcome
gypsy (Dec 18, 2007 8:08:58 PM)
hi jac
Beejay (Dec 18, 2007 8:09:01 PM)
howdy
jac (Dec 18, 2007 8:09:04 PM)
hi this is first time here
Beejay (Dec 18, 2007 8:09:05 PM)
hi jac
txs-sweety (Dec 18, 2007 8:09:07 PM)
hi jac how are you, welcome to our chat
Beejay (Dec 18, 2007 8:09:08 PM)
welcome
sierra (Dec 18, 2007 8:09:14 PM)
oh Tony called me the other day he is doing well and said to send his best to all
sierra (Dec 18, 2007 8:09:27 PM)
Jac would you please tell us a lil something about yourself
Beejay (Dec 18, 2007 8:09:33 PM)
ditto tony
jac (Dec 18, 2007 8:09:41 PM)
my husband was recently diagnosed with LEMS
txs-sweety (Dec 18, 2007 8:09:47 PM)
i heard from billme, first off, he got married second is he doesnt remember his password to get into chat
sierra (Dec 18, 2007 8:10:03 PM)
a friend came over today and helped me was such a blessing
txs-sweety (Dec 18, 2007 8:10:21 PM)
jac i am sorry to hear that, we have a chatter with lems i hope he comes tonight
sierra (Dec 18, 2007 8:10:24 PM)
all he has to do txs is send an email to Penny and she will reset it for him
jac (Dec 18, 2007 8:10:41 PM)
hope so
txs-sweety (Dec 18, 2007 8:10:48 PM)
ok i will let him know does she have an email
txs-sweety (Dec 18, 2007 8:11:01 PM)
can we answer any questions for you jac
jac (Dec 18, 2007 8:11:19 PM)
they aleays thought he had myasthenia gravis but we went to Hopkis and they found this
jac (Dec 18, 2007 8:11:46 PM)
just don't know if we are doing enough
txs-sweety (Dec 18, 2007 8:12:11 PM)
how is your hubby doing right now
sierra (Dec 18, 2007 8:12:14 PM)
phankins@mdausa.org
txs-sweety (Dec 18, 2007 8:12:20 PM)
when was he diagnosed
sierra (Dec 18, 2007 8:12:25 PM)
that is her email
jac (Dec 18, 2007 8:12:46 PM)
not very well so weak and can hardly get out of bed, he is doing PT 3 times a week now
txs-sweety (Dec 18, 2007 8:12:50 PM)
thanks jan i wrote it down
txs-sweety (Dec 18, 2007 8:13:08 PM)
what kind of pt is he doing
jac (Dec 18, 2007 8:13:15 PM)
diagnosed 2 months ago but has had trouble a year
txs-sweety (Dec 18, 2007 8:13:22 PM)
hmmmmmmmmmmmmmm did any of you have pt with mg
txs-sweety (Dec 18, 2007 8:13:38 PM)
yep, took a long time for me to be diagnosed too
Beejay (Dec 18, 2007 8:13:46 PM)
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jac (Dec 18, 2007 8:13:49 PM)
PT comes to house eo build his legs, he is losing muscle mass in legs
txs-sweety (Dec 18, 2007 8:13:56 PM)
beejay come back please
Beejay (Dec 18, 2007 8:14:23 PM)
(This user has entered Myasthenia Chat)
gypsy (Dec 18, 2007 8:14:33 PM)
wb beejay
sierra (Dec 18, 2007 8:14:50 PM)
bj has been hitting the egg nod a lil early hehe
Beejay (Dec 18, 2007 8:14:52 PM)
ty
txs-sweety (Dec 18, 2007 8:14:53 PM)
i am really sorry , i hope it doesnt take to long for him to start gettingf better with the meds he can take
sierra (Dec 18, 2007 8:15:02 PM)
I have therapy weekly, on wednesdays
txs-sweety (Dec 18, 2007 8:15:09 PM)
glad you came back beejay i was missing you
jac (Dec 18, 2007 8:15:14 PM)
does it help
sierra (Dec 18, 2007 8:15:29 PM)
yes it does
jac (Dec 18, 2007 8:15:44 PM)
the meds sure haven't helped
txs-sweety (Dec 18, 2007 8:15:48 PM)
jac it takes a while to figure out the doses of drugs he needs,
jac (Dec 18, 2007 8:15:53 PM)
ok
Beejay (Dec 18, 2007 8:16:03 PM)
glad to be back, i keep hitting something, undoubtly the wrong thing
txs-sweety (Dec 18, 2007 8:16:25 PM)
unfortunately there isnt any right dose, it is individual and trial and error till he starts responding
Beejay (Dec 18, 2007 8:16:39 PM)
amen
jac (Dec 18, 2007 8:16:42 PM)
did it make you sick?
txs-sweety (Dec 18, 2007 8:16:46 PM)
beejay ya gotta quit hitting it lol
jac (Dec 18, 2007 8:16:52 PM)
the meds
txs-sweety (Dec 18, 2007 8:16:56 PM)
jac what is he taking
sierra (Dec 18, 2007 8:16:57 PM)
but my case is a lil different I was misdiagnosed for over ten years and I was "officially" diagnosed 9/18/98 Hopkins and U fo Md said I have had MG for about 15-20 years earlier most of us have been misdiagnosed so just keep hope and just take it one day at a time
txs-sweety (Dec 18, 2007 8:16:59 PM)
and how much
Beejay (Dec 18, 2007 8:17:00 PM)
i would if i knew what i hit
jac (Dec 18, 2007 8:17:34 PM)
he is taking DAP34 and mestinon
txs-sweety (Dec 18, 2007 8:17:35 PM)
lets all admit it, our puter is smarter than the puter operators
txs-sweety (Dec 18, 2007 8:18:14 PM)
his dr will keep increasing his meds till he is responding
jac (Dec 18, 2007 8:18:36 PM)
he did increase but started throwing up
jac (Dec 18, 2007 8:19:20 PM)
guess he will have to keep trying
jac (Dec 18, 2007 8:19:41 PM)
we went to Johns Hopkins too
txs-sweety (Dec 18, 2007 8:19:59 PM)
jac how often does he see his dr
jac (Dec 18, 2007 8:20:17 PM)
every 3 months and CAT scan every 3 months
jac (Dec 18, 2007 8:20:35 PM)
every 3 months and CAT scans every 3 months
txs-sweety (Dec 18, 2007 8:20:36 PM)
he needs to let the dr know he is throwing up, right away
jac (Dec 18, 2007 8:20:51 PM)
i did he cut back
txs-sweety (Dec 18, 2007 8:21:11 PM)
ok
txs-sweety (Dec 18, 2007 8:21:28 PM)
is lhe able to eat
sierra (Dec 18, 2007 8:21:35 PM)
are u keeping a journal? It is important, I feel, to keep one especially in the beginning, so when he sees his dr he can show him what is going on and also so when u have questions you won't forget when u c the dr
jac (Dec 18, 2007 8:21:40 PM)
but the meds don't make him any stronger, still needs wheelchair or walker
Beejay (Dec 18, 2007 8:21:41 PM)
they increased my mestinon to 2 pills 4 times a day, at first it cramped my stomach and made me nauseated but is fine now
sierra (Dec 18, 2007 8:22:11 PM)
I have a wc, scooter, walker, cane
jac (Dec 18, 2007 8:22:19 PM)
good to know
sierra (Dec 18, 2007 8:22:25 PM)
the timespan at night helped me a lot
jac (Dec 18, 2007 8:22:36 PM)
whats that
sierra (Dec 18, 2007 8:22:55 PM)
does he take crackers b4 he takes the mestinon?
txs-sweety (Dec 18, 2007 8:23:04 PM)
keep a journal, but let the dr know right away when there are problems, first of all they have to get him feeling better
jac (Dec 18, 2007 8:23:07 PM)
know should he?
sierra (Dec 18, 2007 8:23:07 PM)
it's a form of mestinon
sierra (Dec 18, 2007 8:23:26 PM)
do u go to the MDA clinic
jac (Dec 18, 2007 8:23:32 PM)
no
jac (Dec 18, 2007 8:23:47 PM)
don't know about that either
sierra (Dec 18, 2007 8:23:53 PM)
which nuero do u c at Hopkins?
jac (Dec 18, 2007 8:24:03 PM)
dr. morrison
txs-sweety (Dec 18, 2007 8:24:05 PM)
it was frustrating for me too to just be scheduled for 3 mons when i still wasnt feeling very well
jac (Dec 18, 2007 8:24:27 PM)
i know we feel like they are doing nothing
txs-sweety (Dec 18, 2007 8:24:38 PM)
does the pt keep in touch with the dr to know how he is doing
txs-sweety (Dec 18, 2007 8:25:00 PM)
jac is your hubby able to eat ok
jac (Dec 18, 2007 8:25:14 PM)
yes we e mail which i am going to do tomorrow because he couldn't get out of bed today
jac (Dec 18, 2007 8:25:28 PM)
yes he eats good
txs-sweety (Dec 18, 2007 8:25:38 PM)
that is a good thing
sierra (Dec 18, 2007 8:25:49 PM)
have u established a good working relationship with the dr's and team? it is important to have that, feel like u can trust and have faith in them and that they speak the language so u can understand them
jac (Dec 18, 2007 8:25:57 PM)
would it help to go to mda?
sierra (Dec 18, 2007 8:26:06 PM)
I think so
txs-sweety (Dec 18, 2007 8:26:12 PM)
when he seems to back slide, it is very important to let the dr know
Beejay (Dec 18, 2007 8:26:13 PM)
me to
Beejay (Dec 18, 2007 8:26:21 PM)
they see more of these cases
jac (Dec 18, 2007 8:26:25 PM)
yes we talk pretty well with the dr.s
sierra (Dec 18, 2007 8:26:42 PM)
your MDA office would be the Towson and Katie McGuire is awesome. Do u live in that area around Baltimore?
txs-sweety (Dec 18, 2007 8:26:55 PM)
jac is the dr familiar with lems or mg
jac (Dec 18, 2007 8:27:06 PM)
no closer to DC in silver spring MD
jac (Dec 18, 2007 8:27:17 PM)
lems
jac (Dec 18, 2007 8:27:26 PM)
no cancer has been found
sierra (Dec 18, 2007 8:27:59 PM)
brb
Beejay (Dec 18, 2007 8:28:05 PM)
ok
txs-sweety (Dec 18, 2007 8:28:08 PM)
if your dr is familiar with lems then he should be ok, but i like mda drs because they specialize in these problems and are up to date on the latest meds
sierra (Dec 18, 2007 8:28:11 PM)
getting something for jac
jac (Dec 18, 2007 8:28:37 PM)
you all are awesome
txs-sweety (Dec 18, 2007 8:28:47 PM)
i'm glad know cancer was found, that is what the dr thought i had too, but i quit going to have the mris and blood taken
Beejay (Dec 18, 2007 8:29:23 PM)
what is the difference between mg and lems i forgot. arent they similar
jac (Dec 18, 2007 8:29:25 PM)
is mda a hospital
txs-sweety (Dec 18, 2007 8:29:26 PM)
jac it is hard having mg and lems but it is harder being the spouse, cause you feel so helpless
jac (Dec 18, 2007 8:29:41 PM)
true i feel so helpless
txs-sweety (Dec 18, 2007 8:29:45 PM)
lems is a small fast growing cancer
txs-sweety (Dec 18, 2007 8:29:49 PM)
lung cancer
txs-sweety (Dec 18, 2007 8:30:07 PM)
but you dont always have lung cancer
jac (Dec 18, 2007 8:30:09 PM)
i know but so far he's clear
Beejay (Dec 18, 2007 8:30:19 PM)
they affect both the one who has it and the caregiver or spouse
txs-sweety (Dec 18, 2007 8:30:20 PM)
dfranks doesnt have any tumors either
txs-sweety (Dec 18, 2007 8:31:37 PM)
jac if dfranks doesnt show up tonight i will email him and tell him about your hubby and you and i am sure he will make an effort to be here next week, or atleast tell me when he can, with Christmas this close he may be celebrating with family already
txs-sweety (Dec 18, 2007 8:32:03 PM)
beejay the symptoms for both are the same, otherwise
jac (Dec 18, 2007 8:32:07 PM)
that would be great, i would appreciate it
txs-sweety (Dec 18, 2007 8:33:21 PM)
if you read about mg you may get the idea that once you are on the right meds everything is peachy, however, we have found that atleast we havent completely gotten our strength back
Beejay (Dec 18, 2007 8:33:56 PM)
it affects us the same in ways but different to if that makes sense
txs-sweety (Dec 18, 2007 8:34:08 PM)
there area several in our chat group that are working,
sierra (Dec 18, 2007 8:34:20 PM)
http://www.mgauk.org/infopack/volume2_1a5.pdf
jac (Dec 18, 2007 8:34:30 PM)
that is what we were afraid of the dr. said he hoped to have him back on the golf course and i'm afraid he gave us false hope
sierra (Dec 18, 2007 8:34:32 PM)
that is info re: LEMS
txs-sweety (Dec 18, 2007 8:35:05 PM)
some wise person compared us to snowflakes, we all have the same name but in all other ways are different, cause of our symptoms and recovery strengths
jac (Dec 18, 2007 8:35:05 PM)
ty sierr
txs-sweety (Dec 18, 2007 8:35:51 PM)
dont give up jac it still could lhappen but it does take time to get the diagnosis right
txs-sweety (Dec 18, 2007 8:36:00 PM)
can i ask your ages please
jac (Dec 18, 2007 8:36:04 PM)
were ahnging in there
Beejay (Dec 18, 2007 8:36:08 PM)
he may after time be able to play some golf. I still play a little, that is better than none, I play more at times than other . depends on the time of day and how i feel, mornings are better
jac (Dec 18, 2007 8:36:10 PM)
67
jac (Dec 18, 2007 8:36:39 PM)
he has never been sick and very active
txs-sweety (Dec 18, 2007 8:36:41 PM)
and there are other things they can do, ivig, plasmapheresis cellcept, provogil and prednisone
jac (Dec 18, 2007 8:37:20 PM)
he had ivig, did nothing
txs-sweety (Dec 18, 2007 8:37:24 PM)
i am 56, 57 in feb
txs-sweety (Dec 18, 2007 8:38:08 PM)
they can do plasma then if he doesnt get stronger, do you have insurance
jac (Dec 18, 2007 8:38:33 PM)
is there mda in rockville or silver spring area
txs-sweety (Dec 18, 2007 8:38:42 PM)
we will have insurance until my hubby gets laid off, we expect it in the next few weeks
jac (Dec 18, 2007 8:38:54 PM)
we have medicare
sierra (Dec 18, 2007 8:39:29 PM)
IVIG .... I felt like Superwoman with it, only thing, I was allergic to it. :(
txs-sweety (Dec 18, 2007 8:39:31 PM)
you can find the nearest hospital back where you first logged into the mda screen i think
jac (Dec 18, 2007 8:39:48 PM)
ok i woll look
sierra (Dec 18, 2007 8:40:00 PM)
Suburban hospital, Georgetown helps with MD
txs-sweety (Dec 18, 2007 8:40:03 PM)
also, you can look in your phone book, mda is the jerry lewis telethon program
txs-sweety (Dec 18, 2007 8:40:18 PM)
muscular dystrophy association
jac (Dec 18, 2007 8:40:22 PM)
ok we are near suburban too
sierra (Dec 18, 2007 8:40:44 PM)
there is a MDA office in DC as well
sierra (Dec 18, 2007 8:40:50 PM)
Greenbelt as well
jac (Dec 18, 2007 8:41:06 PM)
i will check it all out. you have been very helpful
txs-sweety (Dec 18, 2007 8:41:27 PM)
jac you will probably need some kind of refferal, to go there, i did, did any one else need a refferal
Beejay (Dec 18, 2007 8:41:40 PM)
i did
jac (Dec 18, 2007 8:41:51 PM)
from our family dr?
txs-sweety (Dec 18, 2007 8:42:00 PM)
your family dr will probably do it for you
txs-sweety (Dec 18, 2007 8:42:03 PM)
yes jac
sierra (Dec 18, 2007 8:42:07 PM)
oh, before I forget, there will be no MG Chat next tuesday as it is Christmas and then on New Year's (the next two Tuesdays) but we will be back in full force after that so we will c u next year
sierra (Dec 18, 2007 8:42:15 PM)
THINGS WILL BE GREAT IN 2008
jac (Dec 18, 2007 8:42:27 PM)
darn i wish i had found you sooner
Beejay (Dec 18, 2007 8:42:28 PM)
true,true
Beejay (Dec 18, 2007 8:42:51 PM)
hey better late than never.
jac (Dec 18, 2007 8:42:52 PM)
at least i feel there are other things to check
gypsy (Dec 18, 2007 8:43:06 PM)
seems no one is haveing chats around christmas :(
sierra (Dec 18, 2007 8:43:12 PM)
WELL, jac, u r with u us now and we will share our experience, strength and hope with u and be here with u through it
sierra (Dec 18, 2007 8:43:29 PM)
well, u all can come over my house for my birthday party hehe
Beejay (Dec 18, 2007 8:43:36 PM)
I guess to many are out or out of town gypsy
jac (Dec 18, 2007 8:43:45 PM)
wonderful and i will share all with my husband, he needs some hope
Beejay (Dec 18, 2007 8:43:59 PM)
is it soon, happy birthday
sierra (Dec 18, 2007 8:44:03 PM)
well u tell him he has come to the right place hehe
gypsy (Dec 18, 2007 8:44:08 PM)
i guess beejay bit is hard for the ones who have nothing to do or no where to go
Beejay (Dec 18, 2007 8:44:21 PM)
true
sierra (Dec 18, 2007 8:44:23 PM)
Yes it is BJ, December 26th hehehe
jac (Dec 18, 2007 8:44:35 PM)
where are all of you from?
Beejay (Dec 18, 2007 8:44:40 PM)
you was almost a
txs-sweety (Dec 18, 2007 8:44:47 PM)
im in houston
Beejay (Dec 18, 2007 8:44:48 PM)
Christmas baby
sierra (Dec 18, 2007 8:45:01 PM)
Gypsy, maybe there is a chat check out the MDA Calendar
Beejay (Dec 18, 2007 8:45:01 PM)
mississippi
gypsy (Dec 18, 2007 8:45:07 PM)
australia
txs-sweety (Dec 18, 2007 8:45:51 PM)
gypsy is where all the sexy guys live, i love their accents lol
gypsy (Dec 18, 2007 8:46:03 PM)
fshd arn't having theres either sierra
Donlyn (Dec 18, 2007 8:46:21 PM)
(This user has entered Myasthenia Chat)
Beejay (Dec 18, 2007 8:46:33 PM)
hi donlyn
gypsy (Dec 18, 2007 8:46:36 PM)
really txs i haven't seen any
Beejay (Dec 18, 2007 8:46:38 PM)
good to see you
Donlyn (Dec 18, 2007 8:46:43 PM)
Hi Everyone
gypsy (Dec 18, 2007 8:46:48 PM)
hi donlyn
Donlyn (Dec 18, 2007 8:46:57 PM)
How are all of you?
Donlyn (Dec 18, 2007 8:47:12 PM)
Miss you!
txs-sweety (Dec 18, 2007 8:47:37 PM)
donlyn how are you wow its nice to see you
Donlyn (Dec 18, 2007 8:47:53 PM)
thanks Tex - I'm good, legs extreamly weak tonight
Donlyn (Dec 18, 2007 8:48:07 PM)
my oldest son graduated college last Sunday - wore me out!
txs-sweety (Dec 18, 2007 8:48:12 PM)
darn gypsy, watch all my children there is 2 of them
sierra (Dec 18, 2007 8:48:25 PM)
Lambert-Eaton Myasthenic Syndrome (LES) - Welcome to MDA ...Inheritance - There appears to be a genetic predisposition to autoimmune diseases. Facts About MG, Lambert-Eaton Myasthenic Syndrome and CMS ...
www.mda.org/disease/lems.aspx - 25k -
txs-sweety (Dec 18, 2007 8:48:32 PM)
yikes there are two of them
sierra (Dec 18, 2007 8:48:49 PM)
still searching for you, that's why I am silent hehe
sierra (Dec 18, 2007 8:49:22 PM)
MDA / Quest Vol 10 No 3 / Rounding Up the Usual and Not So Usual ...In LEMS, Chad says, " the person feels weak and may have a little fatigability, ... LEMS involves a defect on the nerve side of the neuromuscular junction. ...
www.mda.org/publications/Quest/q103suspects.html - 62k
Donlyn (Dec 18, 2007 8:49:23 PM)
I'm mad at MDA right now - the Denver office is ending the Northern CO support group that meets in Lafayette - we had a great group too
sierra (Dec 18, 2007 8:50:00 PM)
[PDF] 2004 ACTIVE GRANTSFile Format: PDF/Adobe Acrobat - View as HTML
In LEMS, release of chemical messenger acetylcholine between nerve ... identify the protein targets in LEMS by treating mice, in which the gene ...
www.mda.org/research/grants/2004grants.pdf
txs-sweety (Dec 18, 2007 8:50:12 PM)
why are they doing that, doesnt sound very nice
txs-sweety (Dec 18, 2007 8:50:41 PM)
donlyn when is a good time to call you,, i need baklava and paper
Donlyn (Dec 18, 2007 8:50:47 PM)
I'm totally frustrated with MDA right now - they didn't even contact us, but contacted the counselor who organizes the meetings - she's great!
Donlyn (Dec 18, 2007 8:50:54 PM)
lol
Donlyn (Dec 18, 2007 8:51:25 PM)
anytime tomorrow is good to call - but not tonight, Not Thursday, but Friday is good
txs-sweety (Dec 18, 2007 8:51:35 PM)
will call tomorrow
Donlyn (Dec 18, 2007 8:51:36 PM)
baklava can be ordered online too
Donlyn (Dec 18, 2007 8:51:37 PM)
ok
Donlyn (Dec 18, 2007 8:51:42 PM)
good!!! Can't wait
txs-sweety (Dec 18, 2007 8:51:56 PM)
probably in the afternoon 1 ish my time
Donlyn (Dec 18, 2007 8:52:01 PM)
ok
sierra (Dec 18, 2007 8:52:02 PM)
jac, there is some info for you, I will give u a pop quiz in two weeks hehehe
sierra (Dec 18, 2007 8:52:08 PM)
Donlyn welcome
jac (Dec 18, 2007 8:52:08 PM)
LOL
Donlyn (Dec 18, 2007 8:52:16 PM)
HI Jan
Beejay (Dec 18, 2007 8:52:24 PM)
hope we all dont have to take it i was napping ha
Donlyn (Dec 18, 2007 8:52:26 PM)
Hi jac - don't think we have met
txs-sweety (Dec 18, 2007 8:52:32 PM)
i am not good with pop quizzes forget everything
sierra (Dec 18, 2007 8:52:34 PM)
well donlyn, I would feel the person in charge of that group should have been the one to let all know about the change
jac (Dec 18, 2007 8:52:41 PM)
hi donlyn
Donlyn (Dec 18, 2007 8:52:42 PM)
lol - good for you BJ
sierra (Dec 18, 2007 8:52:52 PM)
don't get MAD, do something about it, seek out a place and take your group there
Beejay (Dec 18, 2007 8:53:00 PM)
the forty winks thingy
sierra (Dec 18, 2007 8:53:04 PM)
stress isn't good for any of us hehe
Beejay (Dec 18, 2007 8:53:13 PM)
i feel like a new woman lol
Donlyn (Dec 18, 2007 8:53:22 PM)
the place is not the issue - it's not having the support from MDA that is the problem
Beejay (Dec 18, 2007 8:53:42 PM)
you go girl,
Donlyn (Dec 18, 2007 8:53:43 PM)
the person who runs the group doesn't even get the newsletter - they don't help her at all
sierra (Dec 18, 2007 8:53:45 PM)
well, have you spoken to them directly
gypsy (Dec 18, 2007 8:53:46 PM)
you have way more support there than we do donlyn
Donlyn (Dec 18, 2007 8:54:09 PM)
yes
sierra (Dec 18, 2007 8:54:09 PM)
I have found MDA to be nothing but good in my case
jac (Dec 18, 2007 8:54:10 PM)
are there support groups we can go to?
sierra (Dec 18, 2007 8:54:29 PM)
yes, just call your MDA Office and they can let you know when and where
gypsy (Dec 18, 2007 8:54:33 PM)
that's great sierra
Beejay (Dec 18, 2007 8:54:34 PM)
i live about an hr away from any support and it is usually at night when they have it
jac (Dec 18, 2007 8:54:35 PM)
great
gypsy (Dec 18, 2007 8:54:44 PM)
i have had no help at all here
Donlyn (Dec 18, 2007 8:54:48 PM)
If you are close to one jac - they are few and far - that's why we have this space here
sierra (Dec 18, 2007 8:54:54 PM)
you are welcome here on Tuesdays same time, same place, we will get a chair with your name on it lol
txs-sweety (Dec 18, 2007 8:54:58 PM)
i would like to have a support group here, i think i will ask about it they have one for mls but it is in downtown houston
jac (Dec 18, 2007 8:54:59 PM)
i will check ty
Donlyn (Dec 18, 2007 8:55:09 PM)
no help from my MDA docs - they told me there was nothing they could do for me and to go away
sierra (Dec 18, 2007 8:55:11 PM)
yrw
txs-sweety (Dec 18, 2007 8:55:39 PM)
donlyn that is disgusting you need a different dr in mda mine is greeeeeeeeeeat
sierra (Dec 18, 2007 8:55:40 PM)
we have time still, but I wanted to say to all:
gypsy (Dec 18, 2007 8:56:31 PM)
night all tc happy christmas
sierra (Dec 18, 2007 8:56:42 PM)
Merry Christmas and may you experience the peace and love that the season represents Thank you for being here, see you in two weeks. Happy New Year and may next year be the best ever Hello to those that aren't here tonight
Donlyn (Dec 18, 2007 8:56:43 PM)
My niece and I compare what services we get from the same University Hospital - she gets a ton of support -she has Cystic Fibrosis. I wish we got the same kind of support
sierra (Dec 18, 2007 8:56:45 PM)
God Bless
txs-sweety (Dec 18, 2007 8:56:49 PM)
nite gypsy and have a great warm Christmas
sierra (Dec 18, 2007 8:56:52 PM)
Please keep Hoodie in your prayers
Beejay (Dec 18, 2007 8:56:54 PM)
Merry Christmas gypsy take care and will see you next time
jac (Dec 18, 2007 8:57:07 PM)
god bless and ty
sierra (Dec 18, 2007 8:57:08 PM)
Gyspy so glad u came to visit u r welcome here always
sierra (Dec 18, 2007 8:57:21 PM)
yrw Jac we are HERE for you don't ever forget that
Donlyn (Dec 18, 2007 8:57:23 PM)
have a great time everyone - I'm hoping for a white christmas
txs-sweety (Dec 18, 2007 8:57:33 PM)
all of you have a wonderful and peace filled Christmas
sierra (Dec 18, 2007 8:57:34 PM)
just take it one day at a time, one step at a time
Donlyn (Dec 18, 2007 8:57:39 PM)
Yea for online support!!!
jac (Dec 18, 2007 8:57:52 PM)
i was about to lose it tonight ty so much
Beejay (Dec 18, 2007 8:57:53 PM)
God bless you and your husband jac. we will keep you both in our prayers
gypsy (Dec 18, 2007 8:58:02 PM)
is the only support i have donlyn
Donlyn (Dec 18, 2007 8:58:04 PM)
Sorry I'm late, didn't realize it was so late
Donlyn (Dec 18, 2007 8:58:20 PM)
gypsy - we're here for you!
sierra (Dec 18, 2007 8:58:21 PM)
if you want to stay and chat, feel free to, just switch over to the MDA Foyer or qatest room
txs-sweety (Dec 18, 2007 8:58:42 PM)
i'm just glad you made it at all donlyn thanks for coming and instead of deciding it was to late to come
Donlyn (Dec 18, 2007 8:58:50 PM)
I'm hungry - so won't stay
Beejay (Dec 18, 2007 8:58:52 PM)
MERRY CHRISTMAS TO ALL AND HAPPY NEW YEAR !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
jac (Dec 18, 2007 8:58:57 PM)
night
gypsy (Dec 18, 2007 8:58:58 PM)
thanks
Beejay (Dec 18, 2007 8:59:08 PM)
night all
jac (Dec 18, 2007 8:59:11 PM)
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Beejay (Dec 18, 2007 8:59:12 PM)
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txs-sweety (Dec 18, 2007 8:59:13 PM)
all of you i wish you the best Christmas
Donlyn (Dec 18, 2007 8:59:19 PM)
thanks Tex
Donlyn (Dec 18, 2007 8:59:26 PM)
You are a sweety!
sierra (Dec 18, 2007 8:59:27 PM)
ok I need to go and get my meds take care HO HO HO
txs-sweety (Dec 18, 2007 8:59:31 PM)
all of you that arent here, you are in my prayers too
Donlyn (Dec 18, 2007 8:59:35 PM)
bye Jan - take care
sierra (Dec 18, 2007 8:59:45 PM)
ty ditto
Donlyn (Dec 18, 2007 8:59:45 PM)
mine too
sierra (Dec 18, 2007 8:59:49 PM)
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txs-sweety (Dec 18, 2007 8:59:54 PM)
donlyyn will talk to you tomorrow nite for now
Donlyn (Dec 18, 2007 9:00:04 PM)
ok - good night
Donlyn (Dec 18, 2007 9:00:09 PM)
look forward to it
txs-sweety (Dec 18, 2007 9:00:17 PM)
gypsy nite see you in a couple of weeks
Donlyn (Dec 18, 2007 9:00:20 PM)
bye everyone
Donlyn (Dec 18, 2007 9:00:24 PM)
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txs-sweety (Dec 18, 2007 9:00:38 PM)
gypsy huuuuuuuuuuugs thanks for coming
txs-sweety (Dec 18, 2007 9:00:56 PM)
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txs-sweety (Dec 18, 2007 9:01:06 PM)
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txs-sweety (Dec 18, 2007 9:01:14 PM)
gypsy are you here
txs-sweety (Dec 18, 2007 9:01:30 PM)
nite and take care
txs-sweety (Dec 18, 2007 9:01:38 PM)
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