Mitochondrial Chat
HeatherB (Nov 16, 2009 7:12:03 PM)
HeatherB (Nov 16, 2009 7:12:16 PM)
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HeatherB (Nov 16, 2009 7:12:39 PM)
(This user has entered Mitochondrial Chat)
Jennifer-S (Nov 16, 2009 7:20:52 PM)
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Jennifer-S (Nov 16, 2009 7:21:26 PM)
Hi Heather. how are you doing?
amyilene (Nov 16, 2009 7:23:52 PM)
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HeatherB (Nov 16, 2009 7:23:56 PM)
hi
HeatherB (Nov 16, 2009 7:24:04 PM)
I am ok just put my dog to sleep so sad
amyilene (Nov 16, 2009 7:24:19 PM)
Hello
amyilene (Nov 16, 2009 7:24:25 PM)
I am new to mda, and to mitochondrial disease
amyilene (Nov 16, 2009 7:24:37 PM)
Oh I am so sorry for your loss heather
HeatherB (Nov 16, 2009 7:25:46 PM)
Hi Amy
HeatherB (Nov 16, 2009 7:25:52 PM)
thanks
amyilene (Nov 16, 2009 7:26:24 PM)
Jenn, are the one that sent out the email about the chat tonight. I thought it was mda and mistakenly emailed the group my username and pass saying i couldn't come in lol
amyilene (Nov 16, 2009 7:27:56 PM)
I am fairly new to mito, I had my muscle biopsy done in march and just started IV infusions at home through my port about a month ago. The carnitine and fatty lipids are helping for me, is there something else that you use that helps out?
Jennifer-S (Nov 16, 2009 7:28:10 PM)
oh Heather. I'm sorry. i lost one 2 weeks ago
Jennifer-S (Nov 16, 2009 7:28:14 PM)
hi amy
amyilene (Nov 16, 2009 7:28:41 PM)
hello
HeatherB (Nov 16, 2009 7:28:52 PM)
it is hard
Jennifer-S (Nov 16, 2009 7:28:54 PM)
yes amy it was me
HeatherB (Nov 16, 2009 7:28:57 PM)
she was awesome
amyilene (Nov 16, 2009 7:28:59 PM)
Oh boy sorry for your loss too jennifer :(
HeatherB (Nov 16, 2009 7:29:09 PM)
sorry too
HeatherB (Nov 16, 2009 7:29:18 PM)
I need a puppy
HeatherB (Nov 16, 2009 7:29:22 PM)
I know that sounds bad
Jennifer-S (Nov 16, 2009 7:29:31 PM)
yo might want to change that pass lol
HeatherB (Nov 16, 2009 7:29:33 PM)
but seriously I am not normal without a dog
amyilene (Nov 16, 2009 7:29:45 PM)
I just spent another 40 bux at the vet today because my dog has terrible allergies, and continues to have fleas even though we have used frontline and done zodiac baths
HeatherB (Nov 16, 2009 7:30:21 PM)
yeah we spent like a ton on her these last months
HeatherB (Nov 16, 2009 7:30:29 PM)
she actually had a stay in the vet hospital
amyilene (Nov 16, 2009 7:30:34 PM)
Not that I am complaining about 40 bux we just spent over 300 on the same issue last month
Jennifer-S (Nov 16, 2009 7:30:36 PM)
i feel that way about my cat. stinky our dog was very old and had lived a great life. he just got too sick
amyilene (Nov 16, 2009 7:30:50 PM)
stinky lol
HeatherB (Nov 16, 2009 7:30:54 PM)
Syd was def stinky
HeatherB (Nov 16, 2009 7:31:24 PM)
I am a dog person
HeatherB (Nov 16, 2009 7:31:28 PM)
always have had one
Jennifer-S (Nov 16, 2009 7:31:39 PM)
stinky's first name was baron but he was so stinky as a puppy lol
HeatherB (Nov 16, 2009 7:31:40 PM)
from birth til now
amyilene (Nov 16, 2009 7:31:43 PM)
I am overpopulated
amyilene (Nov 16, 2009 7:31:48 PM)
I have a dog and 4 cats :s
HeatherB (Nov 16, 2009 7:31:52 PM)
wow
amyilene (Nov 16, 2009 7:31:56 PM)
lol
amyilene (Nov 16, 2009 7:32:11 PM)
we initially started out with two then a stray came to us we kept her and now another stray wandered over
HeatherB (Nov 16, 2009 7:32:12 PM)
do you have mito Amy?
amyilene (Nov 16, 2009 7:32:21 PM)
we are packed to capacity and can't take in anymore animals lol
amyilene (Nov 16, 2009 7:32:31 PM)
yes i was just diagnosed this past march with a muscle biopsy
HeatherB (Nov 16, 2009 7:32:36 PM)
we have frogs and a guinea pig and a fish
HeatherB (Nov 16, 2009 7:32:40 PM)
now
Jennifer-S (Nov 16, 2009 7:32:41 PM)
i have a cat here named jasmine and a hamster. i lost another hamster the same week a the dog
HeatherB (Nov 16, 2009 7:32:47 PM)
bummer
Jennifer-S (Nov 16, 2009 7:32:48 PM)
i love frogs
HeatherB (Nov 16, 2009 7:32:56 PM)
these are those
HeatherB (Nov 16, 2009 7:33:04 PM)
water frogs
Jennifer-S (Nov 16, 2009 7:33:08 PM)
who diagnosed you amy?
HeatherB (Nov 16, 2009 7:33:14 PM)
that you dont need to change the water
amyilene (Nov 16, 2009 7:33:20 PM)
I have hannah, pumpkin, fruitloop, and stuart (stew's a girl but the vet told us she was a he) and bella the dog
HeatherB (Nov 16, 2009 7:33:24 PM)
like a little ecosystem
amyilene (Nov 16, 2009 7:33:31 PM)
Dr. Adams at Albany Medical Center Hospital
matt-p (Nov 16, 2009 7:34:08 PM)
(This user has entered Mitochondrial Chat)
Jennifer-S (Nov 16, 2009 7:34:16 PM)
i'm from NY too..niagara area
amyilene (Nov 16, 2009 7:34:16 PM)
Hello Matt
amyilene (Nov 16, 2009 7:34:27 PM)
are you? Do you see Dr. Adams too?
Jennifer-S (Nov 16, 2009 7:34:29 PM)
hi Matt, how are things?
amyilene (Nov 16, 2009 7:34:32 PM)
I'm in Albany
HeatherB (Nov 16, 2009 7:34:36 PM)
hi
Jennifer-S (Nov 16, 2009 7:34:48 PM)
no i see ambrus in buffalo and hirano in nyc
amyilene (Nov 16, 2009 7:35:47 PM)
I went to see Dr. Hirano once and my sister and I waited over 4 hours with a baby and my husband because he was running behind. Dr. HIrano took a look at my case history and the muscle biopsy and said he didn't think it was mito, felt the biopsy results were skewed
Jennifer-S (Nov 16, 2009 7:35:56 PM)
amy you asked about treatments. i take a cocktail of coq10, carnitine, creatine and folic acid that helps
amyilene (Nov 16, 2009 7:36:09 PM)
I felt like he did to me what most doctors did all my life and that was just pass me off for a nutso lol
amyilene (Nov 16, 2009 7:36:55 PM)
brb sister just came here
Jennifer-S (Nov 16, 2009 7:37:23 PM)
how are you feeling heather?
HeatherB (Nov 16, 2009 7:37:32 PM)
soso
HeatherB (Nov 16, 2009 7:37:40 PM)
u?
Jennifer-S (Nov 16, 2009 7:38:06 PM)
i'm having pain issues. i had some kind of flare up after my nyc trip last week
HeatherB (Nov 16, 2009 7:38:26 PM)
me too maybe it is the weather
HeatherB (Nov 16, 2009 7:38:30 PM)
I hurt everywhere
Jennifer-S (Nov 16, 2009 7:38:41 PM)
i'm waiting on lab work to hopefully enlighten us
Jennifer-S (Nov 16, 2009 7:38:58 PM)
no this is more than the weather
HeatherB (Nov 16, 2009 7:39:01 PM)
I dont get labs unless I want to get admitted
HeatherB (Nov 16, 2009 7:39:03 PM)
lol
Jennifer-S (Nov 16, 2009 7:39:10 PM)
what do you do for pain?
HeatherB (Nov 16, 2009 7:39:17 PM)
my blood gase and lactate freak people out
HeatherB (Nov 16, 2009 7:39:40 PM)
well I have morphine for when it is really bad but I dont take anything chronic
HeatherB (Nov 16, 2009 7:39:52 PM)
my liver can get screwy so I dont like tylenol
Jennifer-S (Nov 16, 2009 7:39:58 PM)
i get trigger point injections that help
Jennifer-S (Nov 16, 2009 7:40:11 PM)
tylenol is bad for mito people
HeatherB (Nov 16, 2009 7:40:11 PM)
and the NASIDs cause my GI stuff to go haywire plus I get hypoxic
Jennifer-S (Nov 16, 2009 7:40:18 PM)
my liver is a mess
HeatherB (Nov 16, 2009 7:40:23 PM)
so what are we left with
HeatherB (Nov 16, 2009 7:40:28 PM)
what do you do?
HeatherB (Nov 16, 2009 7:40:50 PM)
usually if I need morphine I am headed to the ICU
HeatherB (Nov 16, 2009 7:41:00 PM)
so that is usually the only time I take anything
Jennifer-S (Nov 16, 2009 7:41:02 PM)
the trigger point injections really work
HeatherB (Nov 16, 2009 7:41:08 PM)
other than that I grin and bear it
Jennifer-S (Nov 16, 2009 7:41:33 PM)
the charley horses are the worst
Jennifer-S (Nov 16, 2009 7:41:44 PM)
i wake up in the middle of the night in agony
HeatherB (Nov 16, 2009 7:42:14 PM)
tat scks sorry
Jennifer-S (Nov 16, 2009 7:42:27 PM)
i'm assuming its lactic acidosis
HeatherB (Nov 16, 2009 7:42:32 PM)
prob
HeatherB (Nov 16, 2009 7:42:38 PM)
my lactate is 5 today
HeatherB (Nov 16, 2009 7:42:40 PM)
awesome
paper (Nov 16, 2009 7:42:43 PM)
(This user has entered Mitochondrial Chat)
Jennifer-S (Nov 16, 2009 7:42:58 PM)
how often do you check it?
HeatherB (Nov 16, 2009 7:43:00 PM)
so i tend to be blue and dusky and achy
Jennifer-S (Nov 16, 2009 7:43:02 PM)
hi paper
HeatherB (Nov 16, 2009 7:43:06 PM)
I have a meter
HeatherB (Nov 16, 2009 7:43:09 PM)
so whenever
HeatherB (Nov 16, 2009 7:43:13 PM)
Hi Paper
Jennifer-S (Nov 16, 2009 7:43:17 PM)
really i didn't know you could do that
HeatherB (Nov 16, 2009 7:43:20 PM)
yup
paper (Nov 16, 2009 7:43:27 PM)
hi all
Jennifer-S (Nov 16, 2009 7:43:30 PM)
how do i get one?
HeatherB (Nov 16, 2009 7:43:35 PM)
it is good to we have cross checked it with the lab numerous times
HeatherB (Nov 16, 2009 7:43:43 PM)
factcanada.com
Jennifer-S (Nov 16, 2009 7:43:55 PM)
not in the us?
HeatherB (Nov 16, 2009 7:43:59 PM)
expensive though
HeatherB (Nov 16, 2009 7:44:04 PM)
he ships here
HeatherB (Nov 16, 2009 7:44:14 PM)
there maybe a US co but they were more expensive
Jennifer-S (Nov 16, 2009 7:44:29 PM)
i wonder if insurance would cover it
Jennifer-S (Nov 16, 2009 7:44:53 PM)
does it work like a glucose meter?
HeatherB (Nov 16, 2009 7:45:10 PM)
yup
HeatherB (Nov 16, 2009 7:45:24 PM)
I havent gotten ins to cover it yet
Jennifer-S (Nov 16, 2009 7:45:27 PM)
are there any treatments for high lactate that you know of?
HeatherB (Nov 16, 2009 7:45:33 PM)
not really good ones
HeatherB (Nov 16, 2009 7:45:45 PM)
I just use it as a measure of when I need to go get fluids
HeatherB (Nov 16, 2009 7:45:48 PM)
or go in
HeatherB (Nov 16, 2009 7:45:57 PM)
when I feel great itis super low
HeatherB (Nov 16, 2009 7:46:05 PM)
then I follow the trend
Jennifer-S (Nov 16, 2009 7:46:09 PM)
how high before you go in?
HeatherB (Nov 16, 2009 7:46:23 PM)
I take it easier when I see it go up
HeatherB (Nov 16, 2009 7:46:29 PM)
hmm I think it was 12 once
Jennifer-S (Nov 16, 2009 7:46:38 PM)
do your leg burn like crazy?
HeatherB (Nov 16, 2009 7:46:42 PM)
but I was in the ICu on a vent out of it
HeatherB (Nov 16, 2009 7:46:53 PM)
mostly ach
HeatherB (Nov 16, 2009 7:46:55 PM)
ahce
HeatherB (Nov 16, 2009 7:46:59 PM)
ache
HeatherB (Nov 16, 2009 7:47:06 PM)
third time
Jennifer-S (Nov 16, 2009 7:47:15 PM)
i don't know how high mine have gone. we always paid more attention to the cpks which have been ridiculous at times
HeatherB (Nov 16, 2009 7:47:34 PM)
how high do your cks go
Jennifer-S (Nov 16, 2009 7:47:37 PM)
81000 once
HeatherB (Nov 16, 2009 7:47:40 PM)
wow
HeatherB (Nov 16, 2009 7:47:48 PM)
and you are sure you have mito
Jennifer-S (Nov 16, 2009 7:47:48 PM)
thats what the drs said lol
Jennifer-S (Nov 16, 2009 7:47:54 PM)
not a doubt
HeatherB (Nov 16, 2009 7:47:59 PM)
what is your defect
Jennifer-S (Nov 16, 2009 7:48:06 PM)
rrfs, deletions, etc
HeatherB (Nov 16, 2009 7:48:19 PM)
wow that is a high ck for mito
Jennifer-S (Nov 16, 2009 7:48:26 PM)
they say kearns sayre but i think its a variant. ks doesn't fit
Jennifer-S (Nov 16, 2009 7:48:37 PM)
hoodie had one higher than me
HeatherB (Nov 16, 2009 7:48:40 PM)
youare way in rhabdo by then
Jennifer-S (Nov 16, 2009 7:48:55 PM)
yes i was. my kidneys shut down
Jennifer-S (Nov 16, 2009 7:49:12 PM)
my drs didn't believe me though and told me to take some motrin
HeatherB (Nov 16, 2009 7:49:52 PM)
great for rahbdo
Jennifer-S (Nov 16, 2009 7:49:55 PM)
by the time the labs came back they were in a panic
HeatherB (Nov 16, 2009 7:50:01 PM)
wow
HeatherB (Nov 16, 2009 7:50:13 PM)
you must have no carnitine
HeatherB (Nov 16, 2009 7:50:16 PM)
I hope you take it
Jennifer-S (Nov 16, 2009 7:50:18 PM)
my kidneys haven't been the same since
HeatherB (Nov 16, 2009 7:50:29 PM)
not after 81,000
Jennifer-S (Nov 16, 2009 7:50:30 PM)
i take it but i'm not deficient
HeatherB (Nov 16, 2009 7:50:30 PM)
wow
Jennifer-S (Nov 16, 2009 7:51:20 PM)
it rarely goes high anymore though. under 5000
HeatherB (Nov 16, 2009 7:51:38 PM)
I have yawned 30 xs I am exhausted I think I am going to call it a night
HeatherB (Nov 16, 2009 7:51:47 PM)
it was nice to chat for a bit
HeatherB (Nov 16, 2009 7:51:51 PM)
have a great night
paper (Nov 16, 2009 7:52:01 PM)
by heather
Jennifer-S (Nov 16, 2009 7:52:11 PM)
you too. nite nite
HeatherB (Nov 16, 2009 7:52:11 PM)
night all
HeatherB (Nov 16, 2009 7:52:13 PM)
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Jennifer-S (Nov 16, 2009 7:52:32 PM)
how are paper and matt?
paper (Nov 16, 2009 7:52:51 PM)
i am ok bad a busy day
paper (Nov 16, 2009 7:53:27 PM)
had not bad lol
Jennifer-S (Nov 16, 2009 7:53:47 PM)
things have busy here too
Jennifer-S (Nov 16, 2009 7:54:03 PM)
i rested yesterday though. watched sports
Jennifer-S (Nov 16, 2009 7:54:23 PM)
i leave for FL Sunday and recently got back from nyc
paper (Nov 16, 2009 7:54:27 PM)
my girl had 2 apts today
amyilene (Nov 16, 2009 7:54:34 PM)
back my sister just came in with balloons that say good luck
Jennifer-S (Nov 16, 2009 7:54:36 PM)
hopefully good ones
amyilene (Nov 16, 2009 7:54:45 PM)
i told her im taking my driviing test tomorrow... i wanted to keep it secret lol
Jennifer-S (Nov 16, 2009 7:54:53 PM)
thats nice. good luck for what?
amyilene (Nov 16, 2009 7:55:03 PM)
im taking my driving test
amyilene (Nov 16, 2009 7:55:09 PM)
apparently she thinks i need the luck
amyilene (Nov 16, 2009 7:55:10 PM)
lol
Jennifer-S (Nov 16, 2009 7:55:17 PM)
cool good luck. are you ready?
paper (Nov 16, 2009 7:55:20 PM)
well she has double ear infection and lung infection and she only has 2 more weeks till she gets her braces off lol
amyilene (Nov 16, 2009 7:55:20 PM)
im 25 its about time i got my drivers liscense
amyilene (Nov 16, 2009 7:55:35 PM)
yeah, i've been taking lessons and tomorrow i have an hour lesson before the test
Jennifer-S (Nov 16, 2009 7:55:44 PM)
not good and good then
Jennifer-S (Nov 16, 2009 7:56:01 PM)
practice all you can. i got mine at 21
amyilene (Nov 16, 2009 7:56:04 PM)
hello papter
paper (Nov 16, 2009 7:56:05 PM)
like i said busy day
paper (Nov 16, 2009 7:56:09 PM)
hi
Jennifer-S (Nov 16, 2009 7:56:12 PM)
i bought a car and made my friends teach me lol
amyilene (Nov 16, 2009 7:56:23 PM)
lol
amyilene (Nov 16, 2009 7:56:43 PM)
I heard that the hospital in buffalo is really good with mito disorders I was considering going there if i couldn't get in with dr korson
amyilene (Nov 16, 2009 7:57:08 PM)
I know I have mito because the carnitine and fatty lipid infusions work.... but I was just wondering if someone can figure out all my stomach issues
Jennifer-S (Nov 16, 2009 7:57:16 PM)
ambrus is good if you can get in to him. otherwise not really
amyilene (Nov 16, 2009 7:57:52 PM)
Dr. Adams is a great doctor he seems to know a lot about mito, I guess I just feel like I should have all the experts on my side lol
Jennifer-S (Nov 16, 2009 7:57:55 PM)
if you do come here see dr maya srivasteva. she's a gi doc that know mito well
amyilene (Nov 16, 2009 7:58:25 PM)
I recently was in the hospital for over a week and a half, I had to have my first port removed a second port put in, I had two bacterial infections, and they found a blood clot in my jugular vein
amyilene (Nov 16, 2009 7:58:47 PM)
Albany Medical Center Hospital is horrible they treated me very badly and have for years , they all think im a drug addict or hypochondriact
Jennifer-S (Nov 16, 2009 7:58:57 PM)
not good
amyilene (Nov 16, 2009 7:59:17 PM)
did i mention they almost killed me three different times in the course of two months
Jennifer-S (Nov 16, 2009 7:59:24 PM)
i've had that treatment. i'm sorry
amyilene (Nov 16, 2009 7:59:25 PM)
Im looking into getting an attorney
Jennifer-S (Nov 16, 2009 7:59:34 PM)
sounds like a good plan
Jennifer-S (Nov 16, 2009 7:59:44 PM)
when did you first get sick?
amyilene (Nov 16, 2009 8:00:01 PM)
Dr. Adam's nurse told me today that she was filing a complaint against the doctors in charge of my care
amyilene (Nov 16, 2009 8:00:04 PM)
during my stay
amyilene (Nov 16, 2009 8:00:50 PM)
I've been sick since childhood running from doctor to doctor not figuring out what was wrong with me. I grew up in a small town and moved to albany for college, i had to drop out of college due to all the medical problems. I found a doctor and on the first visit with no tests he told me that i had fibromyalgia i was treated for that for five years
Jennifer-S (Nov 16, 2009 8:00:56 PM)
i once had an ER diagnose a stroke like episode as psychiatric
Jennifer-S (Nov 16, 2009 8:01:10 PM)
i was too
Jennifer-S (Nov 16, 2009 8:01:24 PM)
where did you grow up?
amyilene (Nov 16, 2009 8:01:31 PM)
I got really sick to the point of not eating or being able to walk, and I told my husband I couldn't do it anymore. I said I had to find out just once more. I decided that if a genetic specialist couldn't figure out what was wrong maybe i was cray
amyilene (Nov 16, 2009 8:01:34 PM)
monticello ny
Jennifer-S (Nov 16, 2009 8:01:45 PM)
i've been there before
amyilene (Nov 16, 2009 8:02:03 PM)
i went to dr. adams he did the regular generic testing and it all came back normal. he even questioned me as to the pain i was in the day i saw him. told me to come back in a year if new symptoms popped up
amyilene (Nov 16, 2009 8:02:14 PM)
thankgod i was diagnosed with gastroparesis i was back in the office 8 months later
amyilene (Nov 16, 2009 8:02:20 PM)
and scheduled for the muscle biopsy
amyilene (Nov 16, 2009 8:02:41 PM)
biopsy came back positive
Jennifer-S (Nov 16, 2009 8:02:52 PM)
now at least you know
amyilene (Nov 16, 2009 8:03:01 PM)
have you had symptoms all throughout? when were you diagnosed?
amyilene (Nov 16, 2009 8:03:13 PM)
yeah, i really thought at many points that I must be nuts
amyilene (Nov 16, 2009 8:03:19 PM)
thats what everyone kept telling me
paper (Nov 16, 2009 8:03:33 PM)
been there done that
amyilene (Nov 16, 2009 8:03:33 PM)
i was in pain but it was normal pain and something i had to learn to live with get over it move on
Jennifer-S (Nov 16, 2009 8:03:43 PM)
i got sicker at about 14. mild symptoms before. i got diagnosed at 20 and will be 40 next week. i'm an old hand at this
Jennifer-S (Nov 16, 2009 8:04:31 PM)
the docs told my parents i was trying to get attention and then that i must have mono
amyilene (Nov 16, 2009 8:04:39 PM)
you said that you were on the mito cocktail i missed what else... they had tried me on coq10 but it made my heart race at 200mg so i stopped it after 2 days... but i am taking clomid we were trying to get pregnant .. so i didn't want to take all of that. dr adams just told me last week to stop the clomid that if i get pregnant it will kill me :s
paper (Nov 16, 2009 8:04:40 PM)
took me 35 years to get dx
amyilene (Nov 16, 2009 8:04:56 PM)
they thought i had munchausen
amyilene (Nov 16, 2009 8:05:01 PM)
i was making myself sick
amyilene (Nov 16, 2009 8:05:03 PM)
lol
amyilene (Nov 16, 2009 8:05:04 PM)
i wish
amyilene (Nov 16, 2009 8:05:10 PM)
paper where are you located?
paper (Nov 16, 2009 8:05:14 PM)
indiana
amyilene (Nov 16, 2009 8:05:22 PM)
did you get dxed there?
paper (Nov 16, 2009 8:05:22 PM)
but i have central core md
paper (Nov 16, 2009 8:05:30 PM)
ya
amyilene (Nov 16, 2009 8:05:41 PM)
what is central core md?
amyilene (Nov 16, 2009 8:05:50 PM)
did you have symptoms from childhood?
Jennifer-S (Nov 16, 2009 8:05:52 PM)
i just take meds to treat symptoms like diabetes and gerd
paper (Nov 16, 2009 8:05:53 PM)
it is myopathy
amyilene (Nov 16, 2009 8:06:01 PM)
i can remember as early as four not being able to walk and laying down on the floor crying
paper (Nov 16, 2009 8:06:02 PM)
yep
Jennifer-S (Nov 16, 2009 8:06:24 PM)
i have been accused of munchausen too with my daughter
amyilene (Nov 16, 2009 8:06:29 PM)
gerd used to be really bad for me i take nexium twice daily and carafate when that doesnt work
Jennifer-S (Nov 16, 2009 8:06:38 PM)
i take prevacid
amyilene (Nov 16, 2009 8:06:54 PM)
thankfully that seems to work, now i have to work on stop vomiting which has been constant since childhood and severe constipation and or diahrea also constant since childhood
paper (Nov 16, 2009 8:06:56 PM)
i take nexium also it kind of works
amyilene (Nov 16, 2009 8:07:03 PM)
i used to take it once a day
amyilene (Nov 16, 2009 8:07:06 PM)
didn't work as good
amyilene (Nov 16, 2009 8:07:10 PM)
the twice a day makes a difference
Jennifer-S (Nov 16, 2009 8:07:26 PM)
i used to sprain my ankles alot and have constant infections. i also had reynauds very young
amyilene (Nov 16, 2009 8:07:36 PM)
what is reynauds?
paper (Nov 16, 2009 8:07:52 PM)
brb
Jennifer-S (Nov 16, 2009 8:08:21 PM)
a circulatory disease
paper (Nov 16, 2009 8:08:29 PM)
ok bk
Jennifer-S (Nov 16, 2009 8:08:32 PM)
my feet and hands turn crazy colors
Jennifer-S (Nov 16, 2009 8:08:41 PM)
its not fun in a cold climate
Jennifer-S (Nov 16, 2009 8:09:08 PM)
dr maya could maybe help your gi issues
amyilene (Nov 16, 2009 8:09:18 PM)
dr adams told me that i had the stomach problems before being diagnosed and that i will have them still.. he doesnt have many answers in that department, and everything i read everywhere most mito patients end up with feeding tube i fear thats in the future
amyilene (Nov 16, 2009 8:09:33 PM)
oh wow in addition to mito you must be in pain most of the time
Jennifer-S (Nov 16, 2009 8:09:59 PM)
not always but this past week hasn't been fun
Jennifer-S (Nov 16, 2009 8:10:24 PM)
what is your exact diagnose?
amyilene (Nov 16, 2009 8:10:30 PM)
I had my port placed a week ago. I tried taking levo carnitine pills 8 pills 3 x a day but made my gi sypmtoms much worse
amyilene (Nov 16, 2009 8:10:35 PM)
mitochondrial myopathy
amyilene (Nov 16, 2009 8:10:51 PM)
I believe he said he felt it was a super complex issues
amyilene (Nov 16, 2009 8:10:52 PM)
issue
Jennifer-S (Nov 16, 2009 8:10:57 PM)
a specific mutation or deficiency?
amyilene (Nov 16, 2009 8:10:58 PM)
with 1 &4
Jennifer-S (Nov 16, 2009 8:11:11 PM)
oh ok. i have 1, 3, 4, and 5
amyilene (Nov 16, 2009 8:11:15 PM)
meaning that the two complexes work good alone but together in my body they dont
paper (Nov 16, 2009 8:11:17 PM)
i am in pain with the ccdmd to i was told be the dr that ccd pts use up there stem cells and when they are gone in an area that is what causes the pasin
amyilene (Nov 16, 2009 8:11:18 PM)
oh wow
amyilene (Nov 16, 2009 8:11:41 PM)
what is ccd?
amyilene (Nov 16, 2009 8:11:46 PM)
sorry i am inept lol
paper (Nov 16, 2009 8:11:53 PM)
central core disored
Jennifer-S (Nov 16, 2009 8:12:08 PM)
paper can you get a stem cell transplant?
paper (Nov 16, 2009 8:12:21 PM)
not yet maybe in future
paper (Nov 16, 2009 8:12:39 PM)
there is a resercher in canada that is working on it
Jennifer-S (Nov 16, 2009 8:12:46 PM)
thats good
amyilene (Nov 16, 2009 8:13:02 PM)
i was really worried that the port was going to take away my ability to live a normal ilfe i imagined being stuck to an iv pole, but i have to portable pumps so most times i throw them in the book bag on wheels and am on the go
Jennifer-S (Nov 16, 2009 8:13:10 PM)
i have problems with ATP (energy) or lack there of
paper (Nov 16, 2009 8:13:16 PM)
ya there is only 2 reserchers in the world working on ccdmd
amyilene (Nov 16, 2009 8:13:19 PM)
i guess i look like a cripple but for what its worth i'd take looking like a cripple and feeling better then looking normal
Jennifer-S (Nov 16, 2009 8:13:32 PM)
just watch for infection
amyilene (Nov 16, 2009 8:13:43 PM)
i am not familiar with central core disorder
paper (Nov 16, 2009 8:13:59 PM)
one of the rare ones
amyilene (Nov 16, 2009 8:14:57 PM)
Dr. adams isn't sure what exactly is wrong with the complex or where the problem iniates/stems from... but the plan of overloading my system with carnitine has seemed to work, i run the fatty lipids which is nasty, i can taste it through the port... i can taste most things which is kind of weird but the fatty lipids are fat and egg and whatever else they throw in there lol
Jennifer-S (Nov 16, 2009 8:15:12 PM)
amy i have given up on looking normal. its helped to accept it and not worry about it anymore
amyilene (Nov 16, 2009 8:15:25 PM)
I am on 10 grams of carnitine a day, but he just put me i believe on 15 for the past two weeks because I have been really sick
amyilene (Nov 16, 2009 8:15:43 PM)
yeah i think i realize normalcy is not in my near or far future lol
amyilene (Nov 16, 2009 8:16:01 PM)
people ask me all the time why i have a port
amyilene (Nov 16, 2009 8:16:05 PM)
do i have cancer or renal failure
amyilene (Nov 16, 2009 8:16:12 PM)
guess it could be worse lol
Jennifer-S (Nov 16, 2009 8:16:16 PM)
i have very droopy eyes (ptosis) from the mito
amyilene (Nov 16, 2009 8:16:35 PM)
me too, you would figure someone would have picked up on that
paper (Nov 16, 2009 8:16:37 PM)
brb
Jennifer-S (Nov 16, 2009 8:16:39 PM)
people think i'm on drugs lol
sweetheaven (Nov 16, 2009 8:16:41 PM)
(This user has entered Mitochondrial Chat)
Jennifer-S (Nov 16, 2009 8:16:47 PM)
hi sweet
amyilene (Nov 16, 2009 8:16:48 PM)
everyone in my family used to make fun of me and refer to me as having "chinese " eyes
sweetheaven (Nov 16, 2009 8:16:51 PM)
good evening everyone
sweetheaven (Nov 16, 2009 8:16:54 PM)
hello paper
amyilene (Nov 16, 2009 8:17:01 PM)
my mom loves chinese food so she used to say she ate too much of it when she was pregnant
amyilene (Nov 16, 2009 8:17:02 PM)
lol
amyilene (Nov 16, 2009 8:17:19 PM)
hello sweetheaven
paper (Nov 16, 2009 8:17:22 PM)
ok bk
sweetheaven (Nov 16, 2009 8:17:27 PM)
hey paper
paper (Nov 16, 2009 8:17:27 PM)
hi sweet
Jennifer-S (Nov 16, 2009 8:17:29 PM)
lol do you see a neuro opthmologist?
sweetheaven (Nov 16, 2009 8:17:33 PM)
hello any
sweetheaven (Nov 16, 2009 8:17:43 PM)
hello amy
sweetheaven (Nov 16, 2009 8:18:08 PM)
So how is everyone tonight
Jennifer-S (Nov 16, 2009 8:18:10 PM)
sweet are you the same sweet that used to be here last year?
amyilene (Nov 16, 2009 8:18:10 PM)
no but that was the one thing that dr. hirano said i should do, my sister has browns syndrome when she looks up her eyes go down and i have dwaynes syndrome when i chew my eyes move up and down
amyilene (Nov 16, 2009 8:18:28 PM)
he said its very uncommon to have to eye disorders in a family and didn't feel our eye problems were properly diagnosed
Jennifer-S (Nov 16, 2009 8:18:48 PM)
i would see a neuro op
sweetheaven (Nov 16, 2009 8:19:02 PM)
md does effect the eye
paper (Nov 16, 2009 8:19:12 PM)
yep it does
Jennifer-S (Nov 16, 2009 8:19:20 PM)
i'm legally blind from it
sweetheaven (Nov 16, 2009 8:19:27 PM)
hello jenn
paper (Nov 16, 2009 8:19:31 PM)
my right eye is starting to droop from it
sweetheaven (Nov 16, 2009 8:19:38 PM)
mine too
amyilene (Nov 16, 2009 8:19:40 PM)
i have an identical twin sister a minute older then me, she has none of the muscle symptoms she has some of the stomach symptoms but not as much but she gets blood clots even while on blood thinners and they can't figure it out they think she may have some type of mito that causes that. she just had a son, and he is 6 months old he has had 2 blue episodes with seizure like activity, and has terrible gastric reflux problems
amyilene (Nov 16, 2009 8:19:47 PM)
they think he has mito, he just had the blood work done
sweetheaven (Nov 16, 2009 8:19:54 PM)
and i am 38 years old and i look like i am in my 40's
amyilene (Nov 16, 2009 8:20:20 PM)
well it doesn't help that i am 25 and i almost need a restricted driver liscense because I can't see
amyilene (Nov 16, 2009 8:20:27 PM)
lol i don't get 20/20 even with glasses
sweetheaven (Nov 16, 2009 8:20:44 PM)
me too
sweetheaven (Nov 16, 2009 8:20:55 PM)
i have 20/20 and i have reading glasses
paper (Nov 16, 2009 8:20:57 PM)
i have had serveral times when i loose sight in my right eye for a couple days
Jennifer-S (Nov 16, 2009 8:21:23 PM)
i have never been 20/20
sweetheaven (Nov 16, 2009 8:21:26 PM)
i get double vision
sweetheaven (Nov 16, 2009 8:21:54 PM)
jenn i will give you some of my sight to you the angles do from above
Jennifer-S (Nov 16, 2009 8:21:54 PM)
i hope your nephew is ok amy
paper (Nov 16, 2009 8:21:58 PM)
i am blind as a bat if i dont got my glasses or contacts in
Jennifer-S (Nov 16, 2009 8:22:14 PM)
tell her to join the mito group on yahoo groups if she has questions
amyilene (Nov 16, 2009 8:22:35 PM)
yeah i didn't think to tell her about the group
amyilene (Nov 16, 2009 8:22:40 PM)
she just asked me tonight to get in the chat
amyilene (Nov 16, 2009 8:22:43 PM)
told her to register
sweetheaven (Nov 16, 2009 8:22:51 PM)
good Amy
sweetheaven (Nov 16, 2009 8:23:13 PM)
have they check his belly Amy meaning your nephew
Jennifer-S (Nov 16, 2009 8:23:17 PM)
they can really help
sweetheaven (Nov 16, 2009 8:23:31 PM)
and your twin
Jennifer-S (Nov 16, 2009 8:23:46 PM)
hirano told me that some forms can be diagnosed by urine now
amyilene (Nov 16, 2009 8:23:53 PM)
really?
sweetheaven (Nov 16, 2009 8:23:56 PM)
yes it can
sweetheaven (Nov 16, 2009 8:24:14 PM)
and MD affect the whole body just not one spot
Jennifer-S (Nov 16, 2009 8:24:24 PM)
get registered with mda also if you aren't already
sweetheaven (Nov 16, 2009 8:24:31 PM)
I should know I have 6 illness from MD
sweetheaven (Nov 16, 2009 8:24:39 PM)
I am
sweetheaven (Nov 16, 2009 8:24:47 PM)
paper you there
paper (Nov 16, 2009 8:24:52 PM)
ya
sweetheaven (Nov 16, 2009 8:24:58 PM)
ok making sure
amyilene (Nov 16, 2009 8:25:01 PM)
hirano was really strange with me he said that he wanted to take me and my sisters blood and do research with it we asked him for what and said he would tell us he drew the blood then we asked again and he said he couldn't tell us lol
paper (Nov 16, 2009 8:25:03 PM)
just poping pills lol
amyilene (Nov 16, 2009 8:25:23 PM)
sweetheaven when were you diagnosed?
sweetheaven (Nov 16, 2009 8:25:24 PM)
thought maybe you went to go get rice cripies treats agian lol
amyilene (Nov 16, 2009 8:25:30 PM)
lol
paper (Nov 16, 2009 8:25:39 PM)
nope they are all gone lol
sweetheaven (Nov 16, 2009 8:25:41 PM)
I have MMD
sweetheaven (Nov 16, 2009 8:25:45 PM)
:(
Jennifer-S (Nov 16, 2009 8:25:47 PM)
hirano is smart but not really a people person
amyilene (Nov 16, 2009 8:25:48 PM)
what is mmd?
amyilene (Nov 16, 2009 8:26:13 PM)
i gathered that from him jenn i think it was just bad because we waited over four hours for him and he spent less then ten minutes in the room with me :s
sweetheaven (Nov 16, 2009 8:26:14 PM)
Myotonia MD
amyilene (Nov 16, 2009 8:26:22 PM)
can't say that made me happy
amyilene (Nov 16, 2009 8:26:31 PM)
considering we drove 3 hours to see him
Jennifer-S (Nov 16, 2009 8:26:42 PM)
i have waited 6 hrs with other docs
paper (Nov 16, 2009 8:26:49 PM)
i hate drs like that
Jennifer-S (Nov 16, 2009 8:27:10 PM)
korson is good if you can get in there
paper (Nov 16, 2009 8:27:12 PM)
i never go bk to one that has done that
sweetheaven (Nov 16, 2009 8:27:15 PM)
Amy I have Myotonia MD
amyilene (Nov 16, 2009 8:27:17 PM)
it seemed like forever it could have been six my appt was for 12 we didn't even end up leaving until about 430 my sister had an appointment with me the same day
Jennifer-S (Nov 16, 2009 8:27:19 PM)
and cleveland clinic
amyilene (Nov 16, 2009 8:27:23 PM)
what is Mytonia md?
sweetheaven (Nov 16, 2009 8:27:36 PM)
it is a form of MD
sweetheaven (Nov 16, 2009 8:27:52 PM)
paper help me out here
paper (Nov 16, 2009 8:28:00 PM)
lol ok hold on
amyilene (Nov 16, 2009 8:28:13 PM)
I keep hearing cleaveland clinic is good, i have medicaid and medicare, i am hoping that if they dont accept nys medicaid that they can accept the medicare part so that i can pay the difference... it might be worth going to see him at some point
paper (Nov 16, 2009 8:29:17 PM)
Definition - One of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles.
Cause - A repeated section of DNA on either chromosome 19 or chromosome 3.
Onset - Congenital form appears at birth. More common form may begin in teen or adult years.
Symptoms - Generalized weakness and muscle wasting first affecting the face, lower legs, forearms, hands and neck, with delayed relaxation of muscles after contraction common. Other symptoms involve the gastrointestinal system, vision, heart or respiration. Learning disabilities occur in some cases. Congenital myotonic dystrophy is the more severe form.
Progression - Progression is slow, sometimes spanning 50 to 60 years.
Inheritance - Autosomal dominant; the disease may be inherited through either the father or the mother.
paper (Nov 16, 2009 8:29:21 PM)
lol
sweetheaven (Nov 16, 2009 8:29:35 PM)
thanks paper
sweetheaven (Nov 16, 2009 8:29:45 PM)
Amy Paper put it up for me lol
paper (Nov 16, 2009 8:29:46 PM)
yw lol
paper (Nov 16, 2009 8:29:57 PM)
good old copy and paste heheh
sweetheaven (Nov 16, 2009 8:30:05 PM)
i feel stupid right now
sweetheaven (Nov 16, 2009 8:30:11 PM)
yup lol
sweetheaven (Nov 16, 2009 8:30:50 PM)
I guess everyone is reading it
paper (Nov 16, 2009 8:30:57 PM)
yup lol
Jennifer-S (Nov 16, 2009 8:31:12 PM)
mito would take much longer to explain lol
Jennifer-S (Nov 16, 2009 8:31:56 PM)
Amy dr cohen at CC is the best and i believe you can get ny medicaid to pay for it if you fight for it
Jennifer-S (Nov 16, 2009 8:32:09 PM)
NY medicaid will pay for transportation too
sweetheaven (Nov 16, 2009 8:32:35 PM)
dah paper i just read that and I have all of them this suxs
paper (Nov 16, 2009 8:32:53 PM)
lol
amyilene (Nov 16, 2009 8:33:02 PM)
ty paper lol
paper (Nov 16, 2009 8:33:07 PM)
yw
amyilene (Nov 16, 2009 8:33:09 PM)
sounds a lot like mito
sweetheaven (Nov 16, 2009 8:33:24 PM)
email that to me please to here monkeylove82397@aol.com
amyilene (Nov 16, 2009 8:33:25 PM)
i can come up with a definition: painful lol
paper (Nov 16, 2009 8:33:26 PM)
all i did was open another pg and go to mda pg and copy it
Jennifer-S (Nov 16, 2009 8:33:38 PM)
monkey love?? lol
amyilene (Nov 16, 2009 8:33:43 PM)
lol
amyilene (Nov 16, 2009 8:33:50 PM)
sweetheaven where are you located?
pete46 (Nov 16, 2009 8:34:13 PM)
(This user has entered Mitochondrial Chat)
pete46 (Nov 16, 2009 8:34:28 PM)
(This user has moved to Living with ALS 2)
Jennifer-S (Nov 16, 2009 8:34:32 PM)
how about "it sucks"
Jennifer-S (Nov 16, 2009 8:34:41 PM)
hi and bye pete
amyilene (Nov 16, 2009 8:35:07 PM)
hello pete
amyilene (Nov 16, 2009 8:35:10 PM)
lmao
amyilene (Nov 16, 2009 8:35:22 PM)
does this chat close at 10?
sweetheaven (Nov 16, 2009 8:35:30 PM)
i live in NJ Amy
Jennifer-S (Nov 16, 2009 8:35:48 PM)
i think 10:15
amyilene (Nov 16, 2009 8:35:50 PM)
oh really a newjersian :P
sweetheaven (Nov 16, 2009 8:35:55 PM)
yup
amyilene (Nov 16, 2009 8:35:55 PM)
lol new york is better :P
Jennifer-S (Nov 16, 2009 8:36:01 PM)
i'm usually off by now since i'm usually by myslef lol
sweetheaven (Nov 16, 2009 8:36:01 PM)
lol
amyilene (Nov 16, 2009 8:36:27 PM)
jenn keep sending out the emails to remind me when to come on
amyilene (Nov 16, 2009 8:36:28 PM)
lol
sweetheaven (Nov 16, 2009 8:36:29 PM)
BRB
Jennifer-S (Nov 16, 2009 8:36:37 PM)
I stayed in NJ last week
Jennifer-S (Nov 16, 2009 8:36:59 PM)
matt and paper visit me lol
paper (Nov 16, 2009 8:37:02 PM)
ok sweet
Jennifer-S (Nov 16, 2009 8:37:05 PM)
we used to be busy
amyilene (Nov 16, 2009 8:37:14 PM)
where in jersey are you?
paper (Nov 16, 2009 8:37:17 PM)
email on its way
amyilene (Nov 16, 2009 8:37:23 PM)
i grew up in monticello we always used to go to the paramus mall
sweetheaven (Nov 16, 2009 8:37:32 PM)
thank you paper
paper (Nov 16, 2009 8:37:35 PM)
yw
amyilene (Nov 16, 2009 8:37:45 PM)
ny i should add lol
Jennifer-S (Nov 16, 2009 8:37:53 PM)
amy what county is that
amyilene (Nov 16, 2009 8:38:15 PM)
middle of hicksville deader then dirt nothing but trees and cows county lol
amyilene (Nov 16, 2009 8:38:17 PM)
Sullivan
paper (Nov 16, 2009 8:38:19 PM)
if you go to this pg http://www.mda.org/disease/ you can look up all the md definations
sweetheaven (Nov 16, 2009 8:38:36 PM)
kool
Jennifer-S (Nov 16, 2009 8:38:50 PM)
doesnt sound like too much fun
amyilene (Nov 16, 2009 8:38:51 PM)
oh ty paper so now i wont have to keep saying whats that lol
paper (Nov 16, 2009 8:38:59 PM)
you didnt know that that was there
amyilene (Nov 16, 2009 8:39:04 PM)
omg it wasnt lol growing up all we did was get drunk and swim lol
amyilene (Nov 16, 2009 8:39:15 PM)
and have bonfires lol
sweetheaven (Nov 16, 2009 8:39:16 PM)
lol
Jennifer-S (Nov 16, 2009 8:39:23 PM)
lol i meant the list of diseases lol
sweetheaven (Nov 16, 2009 8:39:25 PM)
i din't Paper
amyilene (Nov 16, 2009 8:39:28 PM)
lol
paper (Nov 16, 2009 8:39:49 PM)
you all need to surf more
sweetheaven (Nov 16, 2009 8:40:09 PM)
i don't swim in the ocean
amyilene (Nov 16, 2009 8:40:09 PM)
im lucky im able to sit here this long
sweetheaven (Nov 16, 2009 8:40:17 PM)
lake yeah
paper (Nov 16, 2009 8:40:21 PM)
lol
amyilene (Nov 16, 2009 8:40:26 PM)
i have to start the meds soon
Jennifer-S (Nov 16, 2009 8:40:27 PM)
i grew up in niagara falls. the kids got drunk and swam near the falls here though. not me of course
amyilene (Nov 16, 2009 8:40:35 PM)
lol
sweetheaven (Nov 16, 2009 8:40:40 PM)
lol
amyilene (Nov 16, 2009 8:40:50 PM)
i was a goody goody didn't drink really until i was like 19
amyilene (Nov 16, 2009 8:40:50 PM)
lol
Jennifer-S (Nov 16, 2009 8:41:04 PM)
paper the waves aren't very big here
sweetheaven (Nov 16, 2009 8:41:07 PM)
i did that when i was 17
sweetheaven (Nov 16, 2009 8:41:23 PM)
where you from jenn
Jennifer-S (Nov 16, 2009 8:41:24 PM)
surfing the falls would be interesting though
paper (Nov 16, 2009 8:41:26 PM)
lol net surf you ding bats lol
amyilene (Nov 16, 2009 8:41:27 PM)
I have always wanted to see the falls
paper (Nov 16, 2009 8:41:28 PM)
heheh
Jennifer-S (Nov 16, 2009 8:41:28 PM)
niagara falls
amyilene (Nov 16, 2009 8:41:39 PM)
I was in oswego and we considered going
amyilene (Nov 16, 2009 8:41:45 PM)
but it was like a 3 hour drive from there
amyilene (Nov 16, 2009 8:41:59 PM)
i think the canadian falls are closer lmao
sweetheaven (Nov 16, 2009 8:42:05 PM)
lol
sweetheaven (Nov 16, 2009 8:42:20 PM)
where is niagara falls
sweetheaven (Nov 16, 2009 8:42:26 PM)
i feel dum now
amyilene (Nov 16, 2009 8:42:38 PM)
if i go though im not going to just go and look at em im going to be one of those annoying tourists that go on the boat and go ooohhhhh awwww lol
amyilene (Nov 16, 2009 8:42:41 PM)
ny
paper (Nov 16, 2009 8:42:44 PM)
between ny and canada
Jennifer-S (Nov 16, 2009 8:42:45 PM)
i'm too old to understand that reference lol
amyilene (Nov 16, 2009 8:42:48 PM)
way up north in ny
amyilene (Nov 16, 2009 8:43:07 PM)
can't you see the falls in canada?
sweetheaven (Nov 16, 2009 8:43:07 PM)
New York
sweetheaven (Nov 16, 2009 8:43:31 PM)
i am confused now
Jennifer-S (Nov 16, 2009 8:43:34 PM)
i have never been on that boat lol
amyilene (Nov 16, 2009 8:43:46 PM)
oh my friend told me when he went he wont on a tour boat
amyilene (Nov 16, 2009 8:43:50 PM)
that took him under a part of the falls
sweetheaven (Nov 16, 2009 8:44:00 PM)
Paper help
sweetheaven (Nov 16, 2009 8:44:02 PM)
lol
amyilene (Nov 16, 2009 8:44:03 PM)
and then went out near the falls or something
Jennifer-S (Nov 16, 2009 8:44:05 PM)
we are near buffalo if that helps
amyilene (Nov 16, 2009 8:44:15 PM)
its really cold where jenn is
sweetheaven (Nov 16, 2009 8:44:17 PM)
oh ok that Jenn
paper (Nov 16, 2009 8:44:19 PM)
help what
amyilene (Nov 16, 2009 8:44:24 PM)
i don't think i'd last an hour lol
Jennifer-S (Nov 16, 2009 8:44:25 PM)
my reading is slow. im sorry it takes me so long to respond
sweetheaven (Nov 16, 2009 8:44:26 PM)
got it lmao
paper (Nov 16, 2009 8:44:36 PM)
lol
amyilene (Nov 16, 2009 8:44:36 PM)
we have way too much snow here in albany i can't imagine the lake effect snow you guys get
sweetheaven (Nov 16, 2009 8:44:37 PM)
it's ok jenn
Jennifer-S (Nov 16, 2009 8:44:46 PM)
its not that cold here. an old wives tale
paper (Nov 16, 2009 8:45:04 PM)
lake effect means you are so f*****\
sweetheaven (Nov 16, 2009 8:45:05 PM)
it's not cold in New Jersey
amyilene (Nov 16, 2009 8:45:12 PM)
i went to montreal canada during winter and it was FREEZING i vowed never to go back
amyilene (Nov 16, 2009 8:45:12 PM)
lol
sweetheaven (Nov 16, 2009 8:45:15 PM)
lol
paper (Nov 16, 2009 8:45:36 PM)
lets see it is 38 here tonight
Jennifer-S (Nov 16, 2009 8:45:41 PM)
you can see the falls in both countries. i grew up 6 block from it and canada
sweetheaven (Nov 16, 2009 8:45:50 PM)
it is shoot i have to find out hold on
paper (Nov 16, 2009 8:46:05 PM)
google it sweets
sweetheaven (Nov 16, 2009 8:46:11 PM)
46 here
paper (Nov 16, 2009 8:46:15 PM)
lol\
sweetheaven (Nov 16, 2009 8:46:15 PM)
i got it
sweetheaven (Nov 16, 2009 8:46:17 PM)
lol
Jennifer-S (Nov 16, 2009 8:46:19 PM)
amy the boat is the maid of the mist
amyilene (Nov 16, 2009 8:47:04 PM)
yes
paper (Nov 16, 2009 8:47:09 PM)
hey sweets i had to take kat to the dr today she has double ear infection and lung infection'
amyilene (Nov 16, 2009 8:47:12 PM)
if i go I am going on the boat lol
Jennifer-S (Nov 16, 2009 8:47:17 PM)
amy i probably get less snow than you. i live in the north towns
amyilene (Nov 16, 2009 8:47:20 PM)
maybe if i come visit you will take me lol
sweetheaven (Nov 16, 2009 8:47:21 PM)
o noooooo
sweetheaven (Nov 16, 2009 8:47:26 PM)
Kat ok
paper (Nov 16, 2009 8:47:30 PM)
ya sick kid
amyilene (Nov 16, 2009 8:47:34 PM)
have you ever been on the boat?
sweetheaven (Nov 16, 2009 8:48:02 PM)
awwwwww
sweetheaven (Nov 16, 2009 8:48:04 PM)
:(
paper (Nov 16, 2009 8:48:15 PM)
she told dr that her ears wasnt hurting the dr was like no way
amyilene (Nov 16, 2009 8:48:20 PM)
do you know what i got in my mda email????
amyilene (Nov 16, 2009 8:48:21 PM)
OFFICE OF THE CHAIRMAN
CONTRACT AWARDING COMMITTEE
ECOWAS HEADQUARTERS
LOME,REPUBLIC OF TOGO
Attn:Pls.
ACCOUNT PROVISION FOR USD 32M
Forgive my indignation if this message comes to you as a surprise and if it might offend you without your prior consent and writing through this channel.
I am DR HAMMED MUSA,The Chairman, Contract Awarding committee of the ECONOMIC COMMUNITY OF WEST AFRICAN STATES ( ECOWAS)with Headquarters in Lome, Togo.
I got your contact through Network on line in my search for a reliable and reputable person to handle a very confidential transaction that involves a transfer of fund to a foreign account and I decided to write you.
After discussing my view and your profile with my colleagues,they were very much satisfied and decided to contact you immediately for this mutual business relationship.We wish to transfer the sum of USD 32m (Thirty-Two Million United States Dollars only.)into your personal or company`s bank account.
amyilene (Nov 16, 2009 8:48:25 PM)
blah blah blah
amyilene (Nov 16, 2009 8:48:30 PM)
is that a little crazy? lol
Jennifer-S (Nov 16, 2009 8:48:32 PM)
i'll go on the boat
amyilene (Nov 16, 2009 8:48:37 PM)
they even target mda website???
sweetheaven (Nov 16, 2009 8:48:57 PM)
really
paper (Nov 16, 2009 8:49:01 PM)
what crap
amyilene (Nov 16, 2009 8:49:15 PM)
i was surprised to see that in mymda
amyilene (Nov 16, 2009 8:49:19 PM)
mail
Jennifer-S (Nov 16, 2009 8:49:33 PM)
thats not good
Jennifer-S (Nov 16, 2009 8:49:38 PM)
i finally got caught up lol
sweetheaven (Nov 16, 2009 8:49:39 PM)
so did they say what Kat has I hope not the flu
amyilene (Nov 16, 2009 8:49:56 PM)
some dude named hammed1tg
paper (Nov 16, 2009 8:49:57 PM)
no not flu just infections
amyilene (Nov 16, 2009 8:49:58 PM)
lol
sweetheaven (Nov 16, 2009 8:50:06 PM)
O ok
sweetheaven (Nov 16, 2009 8:50:15 PM)
I hope she feels better
paper (Nov 16, 2009 8:50:18 PM)
102 fever though
Jennifer-S (Nov 16, 2009 8:50:23 PM)
i got that e-mail too but didn't open it
sweetheaven (Nov 16, 2009 8:50:30 PM)
guh
Jennifer-S (Nov 16, 2009 8:50:33 PM)
thats no fun paper
amyilene (Nov 16, 2009 8:50:34 PM)
omg i was just in the hopspital for over week an half with two bacterial infections and i started to get a temp again today the nurse called the doctor who said she is going to send me back for blood cultures if it goes up anymore :s]
sweetheaven (Nov 16, 2009 8:50:42 PM)
that is not good paper
amyilene (Nov 16, 2009 8:50:48 PM)
i told her that i think i would shoot myself she told me don't worry she would hang herself lol
Jennifer-S (Nov 16, 2009 8:51:19 PM)
get your drivers license first
amyilene (Nov 16, 2009 8:51:21 PM)
everything that can happen happens to me
sweetheaven (Nov 16, 2009 8:51:33 PM)
Same here amy
amyilene (Nov 16, 2009 8:51:36 PM)
when they first put in my port, two days later i started having palipiations pressure and pain in my chest
paper (Nov 16, 2009 8:51:38 PM)
no but she wants to go to school tomarrow but i dont think so if they even think she has fever they will send her home
amyilene (Nov 16, 2009 8:51:41 PM)
go to the er they dont take me seriously
amyilene (Nov 16, 2009 8:51:49 PM)
get them to admit me they do catscan in the morning
sweetheaven (Nov 16, 2009 8:51:59 PM)
true paper keep her home for a couple of days
amyilene (Nov 16, 2009 8:52:03 PM)
the catheter was so close to my heart it almost punctured it
Jennifer-S (Nov 16, 2009 8:52:12 PM)
that wouldn't be good
amyilene (Nov 16, 2009 8:52:20 PM)
had to do emergency surgery on a sunday was in surgery in less then an hour
paper (Nov 16, 2009 8:52:30 PM)
i have that ear test tomarrow
amyilene (Nov 16, 2009 8:54:32 PM)
the nurse said she has a ton of patients with ports in 15 years never heard that happen to anyone
sweetheaven (Nov 16, 2009 8:54:36 PM)
you go tomorrow
amyilene (Nov 16, 2009 8:54:38 PM)
the doctor been practicing for over 20 years
amyilene (Nov 16, 2009 8:54:44 PM)
never heard it happen to anyone
amyilene (Nov 16, 2009 8:54:44 PM)
lol
sweetheaven (Nov 16, 2009 8:54:47 PM)
not good Amy
Jennifer-S (Nov 16, 2009 8:54:50 PM)
lucky you
paper (Nov 16, 2009 8:54:51 PM)
ya and the skin dr wenday
Jennifer-S (Nov 16, 2009 8:55:04 PM)
what ear test?
sweetheaven (Nov 16, 2009 8:55:08 PM)
o ok
amyilene (Nov 16, 2009 8:55:14 PM)
i know im praying i will take the test and pass and not faint while driving lol
sweetheaven (Nov 16, 2009 8:55:19 PM)
let me know how you make out ok
paper (Nov 16, 2009 8:55:22 PM)
it is to see if i have meneriers sp?
paper (Nov 16, 2009 8:55:28 PM)
k
sweetheaven (Nov 16, 2009 8:55:31 PM)
oh paper hubby had his Upper GI
paper (Nov 16, 2009 8:55:49 PM)
oh ya how did it go
amyilene (Nov 16, 2009 8:56:07 PM)
lol do you know how bad my visiton is
Jennifer-S (Nov 16, 2009 8:56:10 PM)
fainting during the test wouldn't be recommended
amyilene (Nov 16, 2009 8:56:10 PM)
vision
sweetheaven (Nov 16, 2009 8:56:13 PM)
He has acid reflux like me but have to wait on the byps
amyilene (Nov 16, 2009 8:56:17 PM)
i t hought that yellow blob was a rubber ducky
amyilene (Nov 16, 2009 8:56:21 PM)
lmao
Jennifer-S (Nov 16, 2009 8:56:29 PM)
i have menierres
paper (Nov 16, 2009 8:56:40 PM)
really what do they do for it
paper (Nov 16, 2009 8:57:10 PM)
the dizzyness sucks
sweetheaven (Nov 16, 2009 8:57:12 PM)
because cancer runs in his family and his mom died cancer
Jennifer-S (Nov 16, 2009 8:57:24 PM)
lol
paper (Nov 16, 2009 8:57:30 PM)
well hope it is neg sweets
sweetheaven (Nov 16, 2009 8:57:30 PM)
what dizzyness
Jennifer-S (Nov 16, 2009 8:57:34 PM)
hoodie thought my lady bug was a turkey
sweetheaven (Nov 16, 2009 8:57:37 PM)
i hope so too
Jennifer-S (Nov 16, 2009 8:57:49 PM)
nothing paper
sweetheaven (Nov 16, 2009 8:57:56 PM)
the dr said there was nothing I guess they are looking for something else who knows
paper (Nov 16, 2009 8:57:56 PM)
really damn
amyilene (Nov 16, 2009 8:58:08 PM)
ri had no idea what that red blob was
amyilene (Nov 16, 2009 8:58:13 PM)
lmao ty for telling me its a ladybug
Jennifer-S (Nov 16, 2009 8:58:16 PM)
vestibular therapy helps some
amyilene (Nov 16, 2009 8:58:19 PM)
the green thing i picked is a frog lol
amyilene (Nov 16, 2009 8:58:23 PM)
right?
amyilene (Nov 16, 2009 8:58:24 PM)
lmao
Jennifer-S (Nov 16, 2009 8:58:28 PM)
what did you think it was?
paper (Nov 16, 2009 8:58:30 PM)
whats that
Jennifer-S (Nov 16, 2009 8:58:31 PM)
lol
amyilene (Nov 16, 2009 8:58:36 PM)
lmao i didn't know a red soccer ball
paper (Nov 16, 2009 8:58:46 PM)
it looks like a turkey to me lol
sweetheaven (Nov 16, 2009 8:58:48 PM)
huh paper
amyilene (Nov 16, 2009 8:58:49 PM)
i should wear my glasses lmao
sweetheaven (Nov 16, 2009 8:59:03 PM)
i have a flower
sweetheaven (Nov 16, 2009 8:59:12 PM)
i just put mine on lmao
paper (Nov 16, 2009 8:59:15 PM)
jens pic lol looks like a turkey
Jennifer-S (Nov 16, 2009 8:59:21 PM)
i'm the blind one guys and i knew what it was lol
sweetheaven (Nov 16, 2009 8:59:28 PM)
oh i thought it was a ladybug lol
paper (Nov 16, 2009 8:59:35 PM)
lol \
amyilene (Nov 16, 2009 8:59:36 PM)
is that balloons?
paper (Nov 16, 2009 8:59:44 PM)
jelley beans\
amyilene (Nov 16, 2009 8:59:49 PM)
lmao
paper (Nov 16, 2009 8:59:49 PM)
heheheh
sweetheaven (Nov 16, 2009 8:59:50 PM)
lol yummy
Jennifer-S (Nov 16, 2009 8:59:52 PM)
i knew jelly beans
amyilene (Nov 16, 2009 9:00:03 PM)
omg i really need to get my eyes looked at again
amyilene (Nov 16, 2009 9:00:11 PM)
i hope i don't drive into a building tomorrow
paper (Nov 16, 2009 9:00:16 PM)
what is this one
sweetheaven (Nov 16, 2009 9:00:25 PM)
i will pray for you to make it there safe lol
Jennifer-S (Nov 16, 2009 9:00:29 PM)
doughnuts?
paper (Nov 16, 2009 9:00:31 PM)
lol
paper (Nov 16, 2009 9:00:37 PM)
?\
sweetheaven (Nov 16, 2009 9:00:38 PM)
is that what it is
sweetheaven (Nov 16, 2009 9:00:47 PM)
and i have my glasses on too
amyilene (Nov 16, 2009 9:00:50 PM)
thre circles lol
amyilene (Nov 16, 2009 9:00:55 PM)
three
paper (Nov 16, 2009 9:00:57 PM)
i thought it was nuts like nutsandbolts
Jennifer-S (Nov 16, 2009 9:01:04 PM)
is this a personality test??
amyilene (Nov 16, 2009 9:01:09 PM)
lmao
paper (Nov 16, 2009 9:01:09 PM)
hehheehhe
sweetheaven (Nov 16, 2009 9:01:12 PM)
lmao
amyilene (Nov 16, 2009 9:01:19 PM)
flower
sweetheaven (Nov 16, 2009 9:01:20 PM)
how is this
amyilene (Nov 16, 2009 9:01:23 PM)
lmao
amyilene (Nov 16, 2009 9:01:25 PM)
or bug?
sweetheaven (Nov 16, 2009 9:01:30 PM)
no Amy that is a jet
paper (Nov 16, 2009 9:01:31 PM)
what the heck is this one
Jennifer-S (Nov 16, 2009 9:01:40 PM)
whats this?
amyilene (Nov 16, 2009 9:01:41 PM)
lmao
paper (Nov 16, 2009 9:01:41 PM)
is it
amyilene (Nov 16, 2009 9:01:44 PM)
camera
paper (Nov 16, 2009 9:01:47 PM)
heheh\
sweetheaven (Nov 16, 2009 9:01:48 PM)
mine is a gun yours is a JET
amyilene (Nov 16, 2009 9:01:54 PM)
thats not a jet
paper (Nov 16, 2009 9:01:57 PM)
i knew the gun one
amyilene (Nov 16, 2009 9:02:00 PM)
its a fly type bug
amyilene (Nov 16, 2009 9:02:01 PM)
lol
sweetheaven (Nov 16, 2009 9:02:08 PM)
no its a jet
amyilene (Nov 16, 2009 9:02:14 PM)
no its a mouse
amyilene (Nov 16, 2009 9:02:15 PM)
lmao
sweetheaven (Nov 16, 2009 9:02:18 PM)
I am a air force brat i know that one
paper (Nov 16, 2009 9:02:19 PM)
ok this one
amyilene (Nov 16, 2009 9:02:23 PM)
lightbulb
amyilene (Nov 16, 2009 9:02:24 PM)
lmao
Jennifer-S (Nov 16, 2009 9:02:24 PM)
i hope you log readers are enjoying this lol
amyilene (Nov 16, 2009 9:02:26 PM)
im not that blind
paper (Nov 16, 2009 9:02:34 PM)
lmao heheh
amyilene (Nov 16, 2009 9:02:40 PM)
lmao log readers read this?? tell them to make the icons bigger for us blind people lol
sweetheaven (Nov 16, 2009 9:02:41 PM)
lol Jenn
sweetheaven (Nov 16, 2009 9:02:48 PM)
this one
paper (Nov 16, 2009 9:02:48 PM)
lol
paper (Nov 16, 2009 9:02:52 PM)
scull
amyilene (Nov 16, 2009 9:02:53 PM)
skeleton?
sweetheaven (Nov 16, 2009 9:02:57 PM)
oh the light can on paper
amyilene (Nov 16, 2009 9:02:59 PM)
looked like a rock at first
amyilene (Nov 16, 2009 9:03:00 PM)
lol
sweetheaven (Nov 16, 2009 9:03:05 PM)
lol yeah
sweetheaven (Nov 16, 2009 9:03:14 PM)
ok this one
Jennifer-S (Nov 16, 2009 9:03:17 PM)
you can amy. go to fonts
amyilene (Nov 16, 2009 9:03:18 PM)
mushroom
sweetheaven (Nov 16, 2009 9:03:24 PM)
we are now from Marsr
paper (Nov 16, 2009 9:03:24 PM)
ok this one
sweetheaven (Nov 16, 2009 9:03:30 PM)
wheel
amyilene (Nov 16, 2009 9:03:31 PM)
have no idea what that is
sweetheaven (Nov 16, 2009 9:03:37 PM)
mushroom
amyilene (Nov 16, 2009 9:03:41 PM)
oh sweet that makes sense lol
paper (Nov 16, 2009 9:03:43 PM)
lol these icon suck lol
amyilene (Nov 16, 2009 9:03:52 PM)
lmao
sweetheaven (Nov 16, 2009 9:03:59 PM)
lmao
paper (Nov 16, 2009 9:04:04 PM)
ok i hope u know what this one is
amyilene (Nov 16, 2009 9:04:08 PM)
they should paste our icon chat on the front of the mda page
amyilene (Nov 16, 2009 9:04:12 PM)
lmao
sweetheaven (Nov 16, 2009 9:04:14 PM)
turtle
amyilene (Nov 16, 2009 9:04:21 PM)
frog
sweetheaven (Nov 16, 2009 9:04:26 PM)
ok
paper (Nov 16, 2009 9:04:28 PM)
ya sweet ding ding
Jennifer-S (Nov 16, 2009 9:04:32 PM)
hows this?
amyilene (Nov 16, 2009 9:04:33 PM)
lmao
amyilene (Nov 16, 2009 9:04:36 PM)
eggs
amyilene (Nov 16, 2009 9:04:38 PM)
in a nest
amyilene (Nov 16, 2009 9:04:39 PM)
lol
sweetheaven (Nov 16, 2009 9:04:41 PM)
nest
sweetheaven (Nov 16, 2009 9:04:45 PM)
mine
paper (Nov 16, 2009 9:04:49 PM)
nest of a robin
paper (Nov 16, 2009 9:04:53 PM)
lol
amyilene (Nov 16, 2009 9:04:57 PM)
lmao smartie pants
paper (Nov 16, 2009 9:05:03 PM)
heheh
Jennifer-S (Nov 16, 2009 9:05:05 PM)
the turkey is my favorite
Jennifer-S (Nov 16, 2009 9:05:08 PM)
lol
sweetheaven (Nov 16, 2009 9:05:09 PM)
lol spider
amyilene (Nov 16, 2009 9:05:10 PM)
lol
paper (Nov 16, 2009 9:05:24 PM)
it does look like a turkey
Jennifer-S (Nov 16, 2009 9:05:28 PM)
no spiders allowed
amyilene (Nov 16, 2009 9:05:30 PM)
no it doesnt
amyilene (Nov 16, 2009 9:05:35 PM)
lmao it looks like a red soccer ball
paper (Nov 16, 2009 9:05:43 PM)
ok this one
amyilene (Nov 16, 2009 9:05:48 PM)
mask?
sweetheaven (Nov 16, 2009 9:05:53 PM)
xbox controller
Jennifer-S (Nov 16, 2009 9:06:02 PM)
if you guys have a turkey at thanksgiving that is red with black spots, don't eat it
paper (Nov 16, 2009 9:06:02 PM)
no xbox 360 controler
sweetheaven (Nov 16, 2009 9:06:09 PM)
lol i was close lmao
paper (Nov 16, 2009 9:06:14 PM)
lol jen
amyilene (Nov 16, 2009 9:06:22 PM)
oink oink
paper (Nov 16, 2009 9:06:26 PM)
heheh
sweetheaven (Nov 16, 2009 9:06:28 PM)
lol
amyilene (Nov 16, 2009 9:06:29 PM)
lmao jenn
amyilene (Nov 16, 2009 9:06:40 PM)
oink
sweetheaven (Nov 16, 2009 9:06:40 PM)
this one is cute
paper (Nov 16, 2009 9:06:59 PM)
i wish that if you pick one that you could keep it till next time i hate haveing to change the setting every time
amyilene (Nov 16, 2009 9:07:11 PM)
they should let you upload a pic
amyilene (Nov 16, 2009 9:07:12 PM)
lol
paper (Nov 16, 2009 9:07:13 PM)
ya i like the birdys
sweetheaven (Nov 16, 2009 9:07:14 PM)
me too i agree
Jennifer-S (Nov 16, 2009 9:07:14 PM)
pure laziness paper
amyilene (Nov 16, 2009 9:07:18 PM)
lmao
paper (Nov 16, 2009 9:07:21 PM)
lol
sweetheaven (Nov 16, 2009 9:07:25 PM)
lol yup
amyilene (Nov 16, 2009 9:07:40 PM)
i'd probably upload a pic of a pile of dirt
amyilene (Nov 16, 2009 9:07:41 PM)
lol
amyilene (Nov 16, 2009 9:07:46 PM)
or worms
amyilene (Nov 16, 2009 9:07:47 PM)
lol
sweetheaven (Nov 16, 2009 9:07:49 PM)
lol
Jennifer-S (Nov 16, 2009 9:07:52 PM)
can you do that?
sweetheaven (Nov 16, 2009 9:07:53 PM)
Amy lol
paper (Nov 16, 2009 9:07:54 PM)
ok
amyilene (Nov 16, 2009 9:07:54 PM)
lmao
amyilene (Nov 16, 2009 9:08:02 PM)
no they should let us though
sweetheaven (Nov 16, 2009 9:08:03 PM)
what is that
paper (Nov 16, 2009 9:08:10 PM)
what this
paper (Nov 16, 2009 9:08:16 PM)
it is a nanner
sweetheaven (Nov 16, 2009 9:08:22 PM)
oh
paper (Nov 16, 2009 9:08:27 PM)
you know monkie fruit
amyilene (Nov 16, 2009 9:08:32 PM)
omg that font t hing
amyilene (Nov 16, 2009 9:08:35 PM)
very helpful
Jennifer-S (Nov 16, 2009 9:08:35 PM)
oh lol i didn't see that at first
amyilene (Nov 16, 2009 9:08:37 PM)
i can see again
sweetheaven (Nov 16, 2009 9:08:40 PM)
lmao i should of known that
paper (Nov 16, 2009 9:08:45 PM)
ok
amyilene (Nov 16, 2009 9:08:51 PM)
am at 16
amyilene (Nov 16, 2009 9:08:53 PM)
lol
paper (Nov 16, 2009 9:08:55 PM)
ya you should have
Jennifer-S (Nov 16, 2009 9:08:58 PM)
are you guys on facebook?
amyilene (Nov 16, 2009 9:09:02 PM)
yes
sweetheaven (Nov 16, 2009 9:09:02 PM)
yes
paper (Nov 16, 2009 9:09:02 PM)
no
amyilene (Nov 16, 2009 9:09:04 PM)
amy witonsky
amyilene (Nov 16, 2009 9:09:10 PM)
add me
amyilene (Nov 16, 2009 9:09:11 PM)
lol
Jennifer-S (Nov 16, 2009 9:09:18 PM)
do you know how to speak pirate?
amyilene (Nov 16, 2009 9:09:24 PM)
no
amyilene (Nov 16, 2009 9:09:25 PM)
lmao
sweetheaven (Nov 16, 2009 9:09:34 PM)
yes jenn
amyilene (Nov 16, 2009 9:09:42 PM)
aye aye capan
amyilene (Nov 16, 2009 9:09:43 PM)
lol
Jennifer-S (Nov 16, 2009 9:09:55 PM)
that is so funny
amyilene (Nov 16, 2009 9:09:59 PM)
i have aim and msn
amyilene (Nov 16, 2009 9:10:03 PM)
and yahoo msngr
amyilene (Nov 16, 2009 9:10:11 PM)
lmao
Jennifer-S (Nov 16, 2009 9:10:16 PM)
amy i will friend you and teach you pirate
sweetheaven (Nov 16, 2009 9:10:21 PM)
i have yahoo and aol
amyilene (Nov 16, 2009 9:10:23 PM)
what is pirate?
amyilene (Nov 16, 2009 9:10:48 PM)
like captain hook?
amyilene (Nov 16, 2009 9:10:49 PM)
lol
Jennifer-S (Nov 16, 2009 9:11:08 PM)
i'll shoe you tomorrow
Jennifer-S (Nov 16, 2009 9:11:15 PM)
i think we should have that on here
Jennifer-S (Nov 16, 2009 9:11:21 PM)
show
paper (Nov 16, 2009 9:11:24 PM)
shoe you or show u lol
amyilene (Nov 16, 2009 9:11:24 PM)
wow i haven't been to my comments
amyilene (Nov 16, 2009 9:11:25 PM)
page
amyilene (Nov 16, 2009 9:11:28 PM)
people left me a ton of comments
amyilene (Nov 16, 2009 9:11:29 PM)
lolo
amyilene (Nov 16, 2009 9:12:22 PM)
what is lgmd?
Jennifer-S (Nov 16, 2009 9:12:36 PM)
limb girdle
paper (Nov 16, 2009 9:12:37 PM)
hold on amy
Jennifer-S (Nov 16, 2009 9:12:45 PM)
uh oh here it comes lol
sweetheaven (Nov 16, 2009 9:12:50 PM)
lol here go' s paper again
amyilene (Nov 16, 2009 9:12:53 PM)
lol
paper (Nov 16, 2009 9:13:27 PM)
Definition - One of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles.
Cause - A mutation in any of at least 15 different genes that affect proteins necessary for muscle function.
Onset -Childhood to adulthood.
Symptoms - Weakness and wasting first affecting the muscles around the shoulders and hips (limb girdles).
Progression - Usually progresses slowly, with cardiopulmonary complications sometimes occurring in later stages of the disease.
Inheritance - Some types are autosomal dominant, meaning LGMD is inherited from one parent. Other types are autosomal recessive and occur when a faulty gene is inherited from each parent.
paper (Nov 16, 2009 9:13:31 PM)
heheh
sweetheaven (Nov 16, 2009 9:13:34 PM)
thanks paper
paper (Nov 16, 2009 9:13:41 PM)
yw
paper (Nov 16, 2009 9:13:43 PM)
lol
amyilene (Nov 16, 2009 9:13:47 PM)
ty lmao
paper (Nov 16, 2009 9:13:58 PM)
god i love copy and paste lol
sweetheaven (Nov 16, 2009 9:14:04 PM)
lol hehe
Jennifer-S (Nov 16, 2009 9:14:20 PM)
we will rename you dictionary
sweetheaven (Nov 16, 2009 9:14:28 PM)
lol
amyilene (Nov 16, 2009 9:14:34 PM)
i went to the www.mda.org/disease
paper (Nov 16, 2009 9:14:37 PM)
lol
amyilene (Nov 16, 2009 9:14:37 PM)
where on the page do you search
amyilene (Nov 16, 2009 9:14:38 PM)
it
paper (Nov 16, 2009 9:14:50 PM)
here is what is says about ccd
paper (Nov 16, 2009 9:14:55 PM)
Definition - one of a group of diseases that cause problems with the tone and contraction of skeletal muscles
Cause - multiple origins; commonly caused by defects in a gene that carries instructions for a molecular "gate" that releases calcium from inside muscle cells
Onset - congenital; at or near birth
Symptoms - poor muscle tone (hypotonia) and persistent muscle weakness in infants; usually motor milestones reached late; skeletal deformities, including joint dislocations and scoliosis (spinal curvature), often occur; susceptibility to malignant hyperthermia, a dangerous adverse reaction to anesthesia
Progression - slow or no progression
Inheritance - autosomal dominant, or produced by a defective gene contributed by one parent; possibly autosomal recessive, or produced by defective genes contributed by both parents, in rare cases
Facts About Myopathies
amyilene (Nov 16, 2009 9:15:04 PM)
oh wow i didnt realize how many forms of muscular dystrophy there were
paper (Nov 16, 2009 9:15:07 PM)
some of it is bs but you can read it lol
Jennifer-S (Nov 16, 2009 9:15:10 PM)
i prefer the definition "it sucks"
sweetheaven (Nov 16, 2009 9:15:17 PM)
yup
Jennifer-S (Nov 16, 2009 9:15:18 PM)
more than 40
paper (Nov 16, 2009 9:15:19 PM)
lol
amyilene (Nov 16, 2009 9:16:00 PM)
lol
amyilene (Nov 16, 2009 9:16:07 PM)
there are too many diseases out there
Jennifer-S (Nov 16, 2009 9:16:12 PM)
i am a volunteer for mda. i have met most of the diseases
amyilene (Nov 16, 2009 9:16:20 PM)
you would think in this day and age we'd have a cure for everything lol
Jennifer-S (Nov 16, 2009 9:16:26 PM)
paper is covering one that i didn't
amyilene (Nov 16, 2009 9:16:40 PM)
i joined my mda clinic
amyilene (Nov 16, 2009 9:16:54 PM)
i wanted to volunteer at the telethon but I was too sick
Jennifer-S (Nov 16, 2009 9:16:58 PM)
they have some great services
amyilene (Nov 16, 2009 9:17:00 PM)
signed up and everything
amyilene (Nov 16, 2009 9:17:26 PM)
my mda in albany told me that they don't have much money because i had asked them to cover the blood test for mito
amyilene (Nov 16, 2009 9:17:28 PM)
the micro array
Jennifer-S (Nov 16, 2009 9:17:29 PM)
i love the telethons. gives me hope
paper (Nov 16, 2009 9:17:37 PM)
i think i am going to start suffing envlopes for them if they will send them to me
amyilene (Nov 16, 2009 9:17:41 PM)
and they told me they couldn't also because it wasn't really a form of md
sweetheaven (Nov 16, 2009 9:17:50 PM)
they still have that i thought they stopped it when jerry died
Jennifer-S (Nov 16, 2009 9:18:00 PM)
amy medicare and medicaid will cover that
amyilene (Nov 16, 2009 9:18:06 PM)
nope they claim
amyilene (Nov 16, 2009 9:18:09 PM)
dr. adam's office
amyilene (Nov 16, 2009 9:18:18 PM)
claims that medicare wont cover it and because thats primary
amyilene (Nov 16, 2009 9:18:25 PM)
medicaid will deny coverage
Jennifer-S (Nov 16, 2009 9:18:26 PM)
what?? of course it is
paper (Nov 16, 2009 9:18:27 PM)
contact me at laustin316@yahoo.com if you want to or i am papermom on mymda community
amyilene (Nov 16, 2009 9:18:28 PM)
if medicare denies it
Jennifer-S (Nov 16, 2009 9:18:48 PM)
jerry isn't dead
paper (Nov 16, 2009 9:19:03 PM)
ok did i miss something lol
paper (Nov 16, 2009 9:19:32 PM)
jerry
Jennifer-S (Nov 16, 2009 9:19:41 PM)
lewis...he isn't dead
paper (Nov 16, 2009 9:19:42 PM)
is still so alive
paper (Nov 16, 2009 9:19:51 PM)
lol
sweetheaven (Nov 16, 2009 9:19:55 PM)
i am sweetheaven on mydma community and bratoldme702@yahoo.com
sweetheaven (Nov 16, 2009 9:20:06 PM)
i heard he dyed
Jennifer-S (Nov 16, 2009 9:20:18 PM)
amy i appeal everything lol
amyilene (Nov 16, 2009 9:20:28 PM)
oh i should learn to appeal
paper (Nov 16, 2009 9:20:29 PM)
bra told me is that as my bra told me
amyilene (Nov 16, 2009 9:20:34 PM)
i have never appealed
sweetheaven (Nov 16, 2009 9:20:55 PM)
me too
amyilene (Nov 16, 2009 9:21:05 PM)
oh we will have to talk lol
Jennifer-S (Nov 16, 2009 9:21:27 PM)
you guys realize that you are giving these to everyone who reads the logs right
sweetheaven (Nov 16, 2009 9:21:40 PM)
So
paper (Nov 16, 2009 9:21:41 PM)
sweet you need to explain you email addy
amyilene (Nov 16, 2009 9:21:45 PM)
who reads the logs?
paper (Nov 16, 2009 9:21:54 PM)
ya i dont care
amyilene (Nov 16, 2009 9:21:56 PM)
can anyone read it or just mda moderators?
Jennifer-S (Nov 16, 2009 9:22:04 PM)
not sure but i do when i don't make it
paper (Nov 16, 2009 9:22:05 PM)
everyone lol
amyilene (Nov 16, 2009 9:22:14 PM)
ohhhh
amyilene (Nov 16, 2009 9:22:15 PM)
lmao
paper (Nov 16, 2009 9:22:17 PM)
public
amyilene (Nov 16, 2009 9:22:19 PM)
hi everyone nice to meet u
amyilene (Nov 16, 2009 9:22:20 PM)
lmao
sweetheaven (Nov 16, 2009 9:22:26 PM)
No
paper (Nov 16, 2009 9:22:27 PM)
lol
sweetheaven (Nov 16, 2009 9:22:38 PM)
which one paper
amyilene (Nov 16, 2009 9:22:40 PM)
feel free to hit me up on facebook
amyilene (Nov 16, 2009 9:22:41 PM)
lmao
paper (Nov 16, 2009 9:22:45 PM)
the bratoldme
sweetheaven (Nov 16, 2009 9:22:47 PM)
lol
sweetheaven (Nov 16, 2009 9:22:59 PM)
my kids thought of it
sweetheaven (Nov 16, 2009 9:23:10 PM)
i am a brat and old and just me
paper (Nov 16, 2009 9:23:13 PM)
ya feal free to emsail me i need as good laugh
paper (Nov 16, 2009 9:23:23 PM)
lool
sweetheaven (Nov 16, 2009 9:23:25 PM)
me too
sweetheaven (Nov 16, 2009 9:23:44 PM)
mymda is sweetheaven97
sweetheaven (Nov 16, 2009 9:23:49 PM)
i missed up sorry
amyilene (Nov 16, 2009 9:23:54 PM)
what is mine?
amyilene (Nov 16, 2009 9:23:55 PM)
lol
paper (Nov 16, 2009 9:23:59 PM)
and if you are a crazed stalker go for it baby
sweetheaven (Nov 16, 2009 9:24:08 PM)
same here
sweetheaven (Nov 16, 2009 9:24:11 PM)
what Amy
Jennifer-S (Nov 16, 2009 9:24:18 PM)
i'm old too sweet
paper (Nov 16, 2009 9:24:20 PM)
heheh
sweetheaven (Nov 16, 2009 9:24:32 PM)
i am 38
Jennifer-S (Nov 16, 2009 9:24:33 PM)
i'm not ever on mymda though
amyilene (Nov 16, 2009 9:24:34 PM)
i dont know what my mda name is
amyilene (Nov 16, 2009 9:24:37 PM)
how do i find it lol
amyilene (Nov 16, 2009 9:24:43 PM)
i registered but didn't really use the site
Jennifer-S (Nov 16, 2009 9:24:45 PM)
ha i'm older
sweetheaven (Nov 16, 2009 9:24:52 PM)
lol Jenn
paper (Nov 16, 2009 9:25:01 PM)
ok amy how old are u
paper (Nov 16, 2009 9:25:04 PM)
i am 35
amyilene (Nov 16, 2009 9:25:05 PM)
i couldn't really figure out how to use it
amyilene (Nov 16, 2009 9:25:07 PM)
25
amyilene (Nov 16, 2009 9:25:13 PM)
will be 26 on the 25
Jennifer-S (Nov 16, 2009 9:25:13 PM)
i'll be 40 on the 25th
amyilene (Nov 16, 2009 9:25:15 PM)
plz don't remind me
amyilene (Nov 16, 2009 9:25:16 PM)
lol
amyilene (Nov 16, 2009 9:25:17 PM)
omg
paper (Nov 16, 2009 9:25:18 PM)
ya hahhah amy is the baby
amyilene (Nov 16, 2009 9:25:24 PM)
you and i share a birthday jenn
Jennifer-S (Nov 16, 2009 9:25:25 PM)
really amy??
amyilene (Nov 16, 2009 9:25:25 PM)
lol
Jennifer-S (Nov 16, 2009 9:25:34 PM)
how cool
Jennifer-S (Nov 16, 2009 9:25:37 PM)
party
amyilene (Nov 16, 2009 9:25:37 PM)
yes and do you know next year
sweetheaven (Nov 16, 2009 9:25:39 PM)
yeah she is
amyilene (Nov 16, 2009 9:25:41 PM)
our birthday falls on thanksgiving
Jennifer-S (Nov 16, 2009 9:25:45 PM)
turkeys
amyilene (Nov 16, 2009 9:25:48 PM)
lol
sweetheaven (Nov 16, 2009 9:25:51 PM)
stuffing
paper (Nov 16, 2009 9:25:52 PM)
ok months of birth and day only
sweetheaven (Nov 16, 2009 9:25:59 PM)
July
paper (Nov 16, 2009 9:26:02 PM)
8/24
amyilene (Nov 16, 2009 9:26:04 PM)
11/25/83
amyilene (Nov 16, 2009 9:26:05 PM)
lol
sweetheaven (Nov 16, 2009 9:26:18 PM)
7/2
sweetheaven (Nov 16, 2009 9:26:40 PM)
paper you b-day is after my wedding annver
paper (Nov 16, 2009 9:26:41 PM)
come on jen tell
amyilene (Nov 16, 2009 9:26:42 PM)
oh my mda name is amyilene
amyilene (Nov 16, 2009 9:26:43 PM)
lol
amyilene (Nov 16, 2009 9:26:49 PM)
i just found my profile
Jennifer-S (Nov 16, 2009 9:26:52 PM)
11/25
sweetheaven (Nov 16, 2009 9:26:53 PM)
lol
paper (Nov 16, 2009 9:26:54 PM)
lol
sweetheaven (Nov 16, 2009 9:27:05 PM)
after turkey day
amyilene (Nov 16, 2009 9:27:13 PM)
wow doesn't seem like i joined four months ago
paper (Nov 16, 2009 9:27:14 PM)
oh jens bday is comeing
amyilene (Nov 16, 2009 9:27:18 PM)
mine too
amyilene (Nov 16, 2009 9:27:19 PM)
lmao
amyilene (Nov 16, 2009 9:27:32 PM)
jenn what you getting me for my bday?
sweetheaven (Nov 16, 2009 9:27:34 PM)
we will have to send a birthday wish and Amy
amyilene (Nov 16, 2009 9:27:35 PM)
and dont' say turkey lol
paper (Nov 16, 2009 9:27:42 PM)
lol
Jennifer-S (Nov 16, 2009 9:27:42 PM)
i was mistaken for a 20 year old the other day though
sweetheaven (Nov 16, 2009 9:27:43 PM)
stuffing
amyilene (Nov 16, 2009 9:27:48 PM)
lol
paper (Nov 16, 2009 9:27:53 PM)
cool good for u
sweetheaven (Nov 16, 2009 9:28:01 PM)
i can pass as my son sister
amyilene (Nov 16, 2009 9:28:12 PM)
its funny my mom went into labor the day after thanksgiving and blamed it on the spices in thanksgiving dinner
Jennifer-S (Nov 16, 2009 9:28:12 PM)
amy i'll give you pirate lessons
amyilene (Nov 16, 2009 9:28:16 PM)
lmao
paper (Nov 16, 2009 9:28:19 PM)
hell i dont get carded no more
amyilene (Nov 16, 2009 9:28:22 PM)
i imagine black beard
amyilene (Nov 16, 2009 9:28:27 PM)
when you say that
paper (Nov 16, 2009 9:28:38 PM)
i must be looking my age finnally
amyilene (Nov 16, 2009 9:28:46 PM)
i look like im 12
paper (Nov 16, 2009 9:28:47 PM)
lol
amyilene (Nov 16, 2009 9:28:51 PM)
thats why i put up my wedding pictures
Jennifer-S (Nov 16, 2009 9:28:51 PM)
hey we didn't get kcked off
amyilene (Nov 16, 2009 9:28:54 PM)
so people would think im old
amyilene (Nov 16, 2009 9:28:54 PM)
lol
Jennifer-S (Nov 16, 2009 9:29:08 PM)
i'm the moderator. will i get fired lol
sweetheaven (Nov 16, 2009 9:29:11 PM)
me either paper it feels good
amyilene (Nov 16, 2009 9:29:12 PM)
lmao
amyilene (Nov 16, 2009 9:29:24 PM)
jenn you are the mod? lmao
amyilene (Nov 16, 2009 9:29:33 PM)
so i guess i can't say s******************************************************k lol
paper (Nov 16, 2009 9:29:34 PM)
naw not yet we was in a room one night and stayed in it for more than an hr
Jennifer-S (Nov 16, 2009 9:29:38 PM)
lol yah i'm old remember
amyilene (Nov 16, 2009 9:29:53 PM)
lol
sweetheaven (Nov 16, 2009 9:29:58 PM)
lol Jenn
amyilene (Nov 16, 2009 9:30:02 PM)
i changed my pig
amyilene (Nov 16, 2009 9:30:05 PM)
how come it didn't change
amyilene (Nov 16, 2009 9:30:10 PM)
maybe it thinks i am a pig?
amyilene (Nov 16, 2009 9:30:11 PM)
lol
sweetheaven (Nov 16, 2009 9:30:12 PM)
lol did yuo save
amyilene (Nov 16, 2009 9:30:32 PM)
there now im a star
amyilene (Nov 16, 2009 9:30:35 PM)
lmao
amyilene (Nov 16, 2009 9:30:40 PM)
see famous over night
paper (Nov 16, 2009 9:30:47 PM)
god phone just rang and scared the crap out of me
sweetheaven (Nov 16, 2009 9:30:53 PM)
lol
amyilene (Nov 16, 2009 9:30:56 PM)
lol
Jennifer-S (Nov 16, 2009 9:31:06 PM)
oh watch out for meteors tonight between 1 and 4 ET
Jennifer-S (Nov 16, 2009 9:31:12 PM)
very cool
amyilene (Nov 16, 2009 9:31:14 PM)
really?
amyilene (Nov 16, 2009 9:31:19 PM)
ill probably be sleeping
amyilene (Nov 16, 2009 9:31:20 PM)
lol
amyilene (Nov 16, 2009 9:31:33 PM)
it is a meteor shower?
Jennifer-S (Nov 16, 2009 9:31:39 PM)
i live in the city so i probably won't see them
Jennifer-S (Nov 16, 2009 9:31:44 PM)
yup
Jennifer-S (Nov 16, 2009 9:31:47 PM)
leonid
paper (Nov 16, 2009 9:31:51 PM)
i forgot it was on the hook
amyilene (Nov 16, 2009 9:31:53 PM)
ooooh
amyilene (Nov 16, 2009 9:31:55 PM)
the big one
amyilene (Nov 16, 2009 9:32:08 PM)
brb
sweetheaven (Nov 16, 2009 9:32:13 PM)
did i scare you paper
Jennifer-S (Nov 16, 2009 9:32:32 PM)
i guess we can stay on forever if i don't shut down huh
sweetheaven (Nov 16, 2009 9:32:43 PM)
yup
Jennifer-S (Nov 16, 2009 9:32:56 PM)
this is the best chat inages
sweetheaven (Nov 16, 2009 9:33:16 PM)
it was fun i have not laughed like this all day
paper (Nov 16, 2009 9:34:05 PM)
yup
Jennifer-S (Nov 16, 2009 9:34:11 PM)
there was a guy on chat a few years ago that would post the strangest things. we used to laugh so hard. they kicked him off though
paper (Nov 16, 2009 9:34:24 PM)
man
sweetheaven (Nov 16, 2009 9:34:26 PM)
awww
paper (Nov 16, 2009 9:34:30 PM)
was he harless
sweetheaven (Nov 16, 2009 9:34:31 PM)
man
paper (Nov 16, 2009 9:34:40 PM)
harmless
Jennifer-S (Nov 16, 2009 9:35:02 PM)
stuff like "I have a cat" and Mito woman are hot. just stuff like that
sweetheaven (Nov 16, 2009 9:35:11 PM)
ewww
sweetheaven (Nov 16, 2009 9:35:32 PM)
Amy look me up on face book
Jennifer-S (Nov 16, 2009 9:35:32 PM)
it was just so weird but entertaining
sweetheaven (Nov 16, 2009 9:35:42 PM)
lol
paper (Nov 16, 2009 9:35:44 PM)
god look what i typed do subtext it but it looks like hairless instead of harmless llol
Jennifer-S (Nov 16, 2009 9:35:55 PM)
lol
sweetheaven (Nov 16, 2009 9:35:58 PM)
lol
paper (Nov 16, 2009 9:36:06 PM)
oops
paper (Nov 16, 2009 9:36:07 PM)
lol
sweetheaven (Nov 16, 2009 9:36:14 PM)
we all can get away with it don't worry paper
Jennifer-S (Nov 16, 2009 9:36:23 PM)
well guys i do have to sign off or i will not be able to see tomorrow
sweetheaven (Nov 16, 2009 9:36:24 PM)
what happen to amy
sweetheaven (Nov 16, 2009 9:36:44 PM)
awwwww
paper (Nov 16, 2009 9:37:06 PM)
lol
paper (Nov 16, 2009 9:37:21 PM)
AMYYYYYYYY
Jennifer-S (Nov 16, 2009 9:37:22 PM)
i guess i can leave you guys on here without shutting down right
paper (Nov 16, 2009 9:37:27 PM)
oh ya
sweetheaven (Nov 16, 2009 9:37:29 PM)
thanks Jenn
sweetheaven (Nov 16, 2009 9:37:41 PM)
OH AMY WHERE DID YOU GO
paper (Nov 16, 2009 9:37:46 PM)
just us ding bats
sweetheaven (Nov 16, 2009 9:37:55 PM)
COME BACK
Jennifer-S (Nov 16, 2009 9:38:00 PM)
i will try to be here next week. i'll be at a friend's house in FL
sweetheaven (Nov 16, 2009 9:38:09 PM)
take me with you
sweetheaven (Nov 16, 2009 9:38:12 PM)
lol
Jennifer-S (Nov 16, 2009 9:38:13 PM)
probably drug break
paper (Nov 16, 2009 9:38:14 PM)
ok dont leave us hanging here
paper (Nov 16, 2009 9:38:18 PM)
lol
Jennifer-S (Nov 16, 2009 9:38:26 PM)
good luck with the tests
paper (Nov 16, 2009 9:38:36 PM)
if we were not us that would sound really bad drug break
Jennifer-S (Nov 16, 2009 9:38:38 PM)
driving, ear, etc
paper (Nov 16, 2009 9:38:49 PM)
lol
sweetheaven (Nov 16, 2009 9:38:55 PM)
lol
paper (Nov 16, 2009 9:38:56 PM)
ya we will need it
Jennifer-S (Nov 16, 2009 9:39:06 PM)
my drugs aren't very exciting
paper (Nov 16, 2009 9:39:10 PM)
drugs snortttttttttttttt
paper (Nov 16, 2009 9:39:16 PM)
lol
sweetheaven (Nov 16, 2009 9:39:16 PM)
lol
sweetheaven (Nov 16, 2009 9:39:39 PM)
your bad paper lol
sweetheaven (Nov 16, 2009 9:39:41 PM)
:)
paper (Nov 16, 2009 9:39:46 PM)
i know isnt it great
Jennifer-S (Nov 16, 2009 9:39:52 PM)
lol guys. nite nite. have a good and healthy week
sweetheaven (Nov 16, 2009 9:40:00 PM)
i can't stop laughing
paper (Nov 16, 2009 9:40:02 PM)
u to safe trip\
sweetheaven (Nov 16, 2009 9:40:12 PM)
you too Jenn see you next monday ok
paper (Nov 16, 2009 9:40:14 PM)
hehhehe
Jennifer-S (Nov 16, 2009 9:40:19 PM)
bye
Jennifer-S (Nov 16, 2009 9:40:22 PM)
(This user has left DigiChat)
sweetheaven (Nov 16, 2009 9:40:23 PM)
yup safe trip Jenn
paper (Nov 16, 2009 9:40:33 PM)
poof she blew up lol
paper (Nov 16, 2009 9:40:40 PM)
arrrrrrrrr
sweetheaven (Nov 16, 2009 9:40:40 PM)
lmao
sweetheaven (Nov 16, 2009 9:40:52 PM)
where did everyone go
paper (Nov 16, 2009 9:40:57 PM)
?
sweetheaven (Nov 16, 2009 9:41:08 PM)
what
paper (Nov 16, 2009 9:41:20 PM)
lets go to yahell
sweetheaven (Nov 16, 2009 9:41:28 PM)
ok let go there
paper (Nov 16, 2009 9:41:35 PM)
night amy
paper (Nov 16, 2009 9:41:41 PM)
(This user has left DigiChat)
sweetheaven (Nov 16, 2009 9:41:41 PM)
night Amy
sweetheaven (Nov 16, 2009 9:41:45 PM)
(This user has left DigiChat)