Mitochondrial Chat

AmberB (Mar 8, 2010 7:47:27 PM)
(This user has entered Mitochondrial Chat)

paper (Mar 8, 2010 7:47:34 PM)
oh hi amber

Steve1 (Mar 8, 2010 7:47:43 PM)
(This user has entered Mitochondrial Chat)

paper (Mar 8, 2010 7:47:51 PM)
i dont think we have ever talked

paper (Mar 8, 2010 7:47:53 PM)
hi steve

AmberB (Mar 8, 2010 7:48:00 PM)
hi. I am new here

paper (Mar 8, 2010 7:48:20 PM)
welcome \

AmberB (Mar 8, 2010 7:48:28 PM)
brb

paper (Mar 8, 2010 7:48:31 PM)
usually there is a bunch of us here

Steve1 (Mar 8, 2010 7:48:48 PM)
New to MDA chat. Thanks for your welcome.

paper (Mar 8, 2010 7:49:01 PM)
glad to meet both u

paper (Mar 8, 2010 7:49:19 PM)
i dont have mito but i do have ccd

paper (Mar 8, 2010 7:49:33 PM)
i am 35 and i am in indiana how about u 2

Steve1 (Mar 8, 2010 7:50:09 PM)
60M in Michigan, MERRF

paper (Mar 8, 2010 7:50:16 PM)
oh and i am a mom of 2 with ccd also

paper (Mar 8, 2010 7:50:30 PM)
merrf

AmberB (Mar 8, 2010 7:50:34 PM)
sorry, my husband called

paper (Mar 8, 2010 7:50:40 PM)
thats ok

AmberB (Mar 8, 2010 7:51:09 PM)
i am 29 and have a daughter with mito, and they suspect the other 3 have it too. my mom has MG

paper (Mar 8, 2010 7:51:13 PM)
i am sorry i dont know what merrf is

Steve1 (Mar 8, 2010 7:51:56 PM)
myoclonus epilepsy with ragged red fibers. (MERRF)

Steve1 (Mar 8, 2010 7:52:06 PM)
Anyway I don't know what ccd is

paper (Mar 8, 2010 7:52:07 PM)
oh ok

paper (Mar 8, 2010 7:52:21 PM)
ccd= central core md

Steve1 (Mar 8, 2010 7:52:57 PM)
merrf is a lot like melas, another "common" mito mutation

paper (Mar 8, 2010 7:53:06 PM)
oh ok

AmberB (Mar 8, 2010 7:53:08 PM)
My daughter that has the mito dx also has arthrogryposis, so it took them a long time to dx her. I also have twins, one has Nonverbal Learning Disability (like Aspergers) and the other was born without arms

paper (Mar 8, 2010 7:53:51 PM)
wow thats a lot to deal with i bet how old are they all

Steve1 (Mar 8, 2010 7:54:05 PM)
amber did you say if YOU have mito?

AmberB (Mar 8, 2010 7:55:06 PM)
the MDA doc has them on Creatine and CoQ10 for mito. I don't know, I have never been tested, but I assume that I either have it or am a carrier. I have had some Myasthenia symptoms in my life

Steve1 (Mar 8, 2010 7:55:30 PM)
Co help at all?

AmberB (Mar 8, 2010 7:55:44 PM)
Alisha is 7, Ally and Anna are 6, Ashley is 5.

paper (Mar 8, 2010 7:55:53 PM)
my youngest a girl has devlopmental dyspraxia = ie a speach motor disorder

AmberB (Mar 8, 2010 7:56:25 PM)
Creatine helps a LOT, but did not see a major change with CoQ10.

AmberB (Mar 8, 2010 7:56:41 PM)
sorry to hear that

AmberB (Mar 8, 2010 7:57:08 PM)
how long have u guys had the diagnoses?

Steve1 (Mar 8, 2010 7:57:11 PM)
Sometimes I feel like a whiner around folks with HUGE issues, I can walk and talk.

paper (Mar 8, 2010 7:57:14 PM)
she got it cause of a reaction to baby shot at 9 months

paper (Mar 8, 2010 7:57:44 PM)
i dont have mito but i do have another type of md called central core

AmberB (Mar 8, 2010 7:58:16 PM)
My baby brother had a reaction to his 2 mos shots and passed away. I was scared to get my kids vaccinated

AmberB (Mar 8, 2010 7:58:22 PM)
what does that mean?

Steve1 (Mar 8, 2010 7:58:23 PM)
DX in 2004, major symptoms started in 2000, actually something was "wrong" throughout adulthood.

AmberB (Mar 8, 2010 7:58:41 PM)
what made you think something was wrong?

paper (Mar 8, 2010 7:59:09 PM)
i have allways has problems since birth i didnt get a dx till last year

paper (Mar 8, 2010 8:00:07 PM)
i had to get my kids tested so we would know and plus for proper medications if they ever find out what to give us all u see my type of md is very very rare

Steve1 (Mar 8, 2010 8:01:17 PM)
Is ccd inherited?

paper (Mar 8, 2010 8:01:33 PM)
yes it is a genetic dominate

Steve1 (Mar 8, 2010 8:01:53 PM)
In mitochondrial or nuclear DNA?

AmberB (Mar 8, 2010 8:02:00 PM)
My oldest daughter has the amyoplasia type of arthrogryposis, which is not on the MDA disease list (but should be, IMO). We never saw an MDA doc until this year because she has been complaining of her whole body hurting for years and nobody could figure it out

paper (Mar 8, 2010 8:02:46 PM)
know how that is i have been living with pain for 35 years

paper (Mar 8, 2010 8:03:18 PM)
my son 15 is a manafesting carrier for ccd

AmberB (Mar 8, 2010 8:04:44 PM)
he said that he suspected a Mitocondrial disorder and he wanted to try creatine and coq10. After a few weeks she was feeling so much better. He wants to avoid a muscle biopsy if possible because she does not have much muscle in her body because of the AMC.

Steve1 (Mar 8, 2010 8:05:15 PM)
Tried carnitine?

AmberB (Mar 8, 2010 8:06:05 PM)
that is next on the list to add. he wants to add them one at a time so we can monitor them better.

paper (Mar 8, 2010 8:06:21 PM)
there is no treatment for ccd other than pain meds

paper (Mar 8, 2010 8:06:43 PM)
i am glad they have found somthing for mito that can help

Steve1 (Mar 8, 2010 8:07:26 PM)
There is no treatment listed for most mito, either, but some things help. So I've heard, and also I've experimented a LOT, settled on just CoQ for now.

AmberB (Mar 8, 2010 8:07:31 PM)
what exactly does ccd cause? I am quite familiar with different types of arthrogryposis, but this is my first time in chat and I am not familiar with these dx'es

paper (Mar 8, 2010 8:08:20 PM)
ccd causes pain weakness balance issues swollowing prob,and a whole list of crap

AmberB (Mar 8, 2010 8:08:41 PM)
sounds similar to myasthenia

paper (Mar 8, 2010 8:08:54 PM)
it has a lot of things like the other types of mds

Steve1 (Mar 8, 2010 8:09:18 PM)
Many are so much alike. Just part of the dx prob.

paper (Mar 8, 2010 8:09:21 PM)
it dont cause death

AmberB (Mar 8, 2010 8:09:30 PM)
no kidding

AmberB (Mar 8, 2010 8:09:31 PM)
good

paper (Mar 8, 2010 8:09:35 PM)
but it does take your legs

paper (Mar 8, 2010 8:09:47 PM)
and arms

Steve1 (Mar 8, 2010 8:10:28 PM)
I wonder how many injuries that sometimes are fatal are due to these murky things, that only recently get dx at all

AmberB (Mar 8, 2010 8:10:32 PM)
try having the kids I have- full sisters, a set of unidentical identical twins, and multiple one in a million diagnoses' . Nobody can figure us out

paper (Mar 8, 2010 8:11:12 PM)
ya i hate the fact i gave my kids md but i didn know before i had them

Steve1 (Mar 8, 2010 8:11:37 PM)
What are unident. ident.? I thought they either were from the same zygote, or not.

AmberB (Mar 8, 2010 8:12:30 PM)
discordant monozygotic twins. they have the same dna, but one of them is armless and the other has NVLD

AmberB (Mar 8, 2010 8:12:38 PM)
and does have arms

Steve1 (Mar 8, 2010 8:13:12 PM)
So the development is the diff?

paper (Mar 8, 2010 8:13:16 PM)
well u 2 great meeting u i dont know where everybody else is but i hope u come bk next week but i have to get off here ttfn

paper (Mar 8, 2010 8:13:18 PM)
(This user has left DigiChat)

Steve1 (Mar 8, 2010 8:13:58 PM)
Hmm that was a bit abrupt. How you doing today, amber?

AmberB (Mar 8, 2010 8:14:50 PM)
it happens sometimes. egg doesn't split quite equally- or what they think happened is that my blood clotting disorder that i got during pregnancy caused one to get clots and the other not to- they dont really know

AmberB (Mar 8, 2010 8:15:19 PM)
i know. i was sending her a message then she was gone

Steve1 (Mar 8, 2010 8:15:39 PM)
Perhaps you'd comment on a strange thing a doc once said??

AmberB (Mar 8, 2010 8:16:51 PM)
what?

Steve1 (Mar 8, 2010 8:17:35 PM)
Odd context, but he said, if he had to choose, he'd rather lose his arms than his legs.

AmberB (Mar 8, 2010 8:19:27 PM)
well, my armless daughter uses her feet as hands. and my arthro kid doesn't have use of her arms and limited use of legs. I would have to say that it would still be better to lose legs, because you can be completely independent with no legs, but with no arms it is hard to take yourself to the bathroom

AmberB (Mar 8, 2010 8:19:36 PM)
and wash the back of your hair

Steve1 (Mar 8, 2010 8:21:20 PM)
I was surprised, and he replied "every try walking on your hands?". I think he was thinking mainly about locomotion, a little short sighted IMHO

AmberB (Mar 8, 2010 8:21:23 PM)
but with no legs you would not be eye level with people, and i would not want to look up to people all day

AmberB (Mar 8, 2010 8:22:34 PM)
i have seen it done, but i would think wrists would give out

AmberB (Mar 8, 2010 8:22:54 PM)
do u have kids?

Steve1 (Mar 8, 2010 8:23:32 PM)
one boy and one girl, both in mid twenties

AmberB (Mar 8, 2010 8:23:41 PM)
cool. are they hea?lthy

AmberB (Mar 8, 2010 8:24:28 PM)
oops- just got new laptop and keys are a little different. i am having a hard time finding my way around the keyboard for some reason

Steve1 (Mar 8, 2010 8:25:33 PM)
I hope that the mito I have is maternally inherited and hence they don't have it. Jake has severe ADHD and who knows what else (schiz? Katherine is completely healthy.

Steve1 (Mar 8, 2010 8:26:23 PM)
I have a new-ish netbook, great for us energy-stressed types, screen is smally but reading glasses do it

Steve1 (Mar 8, 2010 8:27:08 PM)
What's it like, giving "it" to your kids? My guess is, awful.

AmberB (Mar 8, 2010 8:27:58 PM)
it was hard at times. very hard. but you learn to accept it

Steve1 (Mar 8, 2010 8:28:25 PM)
Did you say you're in Indiana?

AmberB (Mar 8, 2010 8:28:52 PM)
I think God knew what he was doing and the girls will be better for it in the end. So I don't (usually) let it get to me.

AmberB (Mar 8, 2010 8:29:01 PM)
idaho

Steve1 (Mar 8, 2010 8:29:43 PM)
Oops maybe that was paper in IN. What's in Idaho, mountains? Must be still pretty cold.

matt-p (Mar 8, 2010 8:30:26 PM)
(This user has entered Mitochondrial Chat)

AmberB (Mar 8, 2010 8:30:30 PM)
yes, lots of mountains. It is beautiful in places, and deserty in places. it was nice and 65* yesterday but rainy today

AmberB (Mar 8, 2010 8:30:39 PM)
hi matt

matt-p (Mar 8, 2010 8:30:41 PM)
hi

matt-p (Mar 8, 2010 8:30:57 PM)
amber i dont remember ya

Steve1 (Mar 8, 2010 8:31:02 PM)
Hi matt just the two of us chat newbies

AmberB (Mar 8, 2010 8:31:02 PM)
i am new

Steve1 (Mar 8, 2010 8:31:15 PM)
What dx matt?

matt-p (Mar 8, 2010 8:31:18 PM)
neat

matt-p (Mar 8, 2010 8:31:30 PM)
sci at 9

matt-p (Mar 8, 2010 8:31:36 PM)
age 9

Steve1 (Mar 8, 2010 8:31:52 PM)
Now explain sci :-)

AmberB (Mar 8, 2010 8:31:56 PM)
sci? i am really new

matt-p (Mar 8, 2010 8:31:57 PM)
spinal cord injury

matt-p (Mar 8, 2010 8:32:20 PM)
also have parkinsons

AmberB (Mar 8, 2010 8:32:23 PM)
sorry to hear. is sci covered under mda?

Steve1 (Mar 8, 2010 8:32:29 PM)
That's not mito, matt. RU room hopping?

Steve1 (Mar 8, 2010 8:32:45 PM)
Sorry that came out as non-cordial

matt-p (Mar 8, 2010 8:33:01 PM)
no room hopping

Steve1 (Mar 8, 2010 8:33:21 PM)
Where from matt?

matt-p (Mar 8, 2010 8:33:44 PM)
i heard that parkinson may be linked to it

matt-p (Mar 8, 2010 8:33:49 PM)
in

AmberB (Mar 8, 2010 8:34:04 PM)
to mito myopathy?

Steve1 (Mar 8, 2010 8:34:07 PM)
mi here

AmberB (Mar 8, 2010 8:34:11 PM)
id here

matt-p (Mar 8, 2010 8:34:30 PM)
tneat

Steve1 (Mar 8, 2010 8:34:31 PM)
funny, same way of putting it. MERRF here.

matt-p (Mar 8, 2010 8:34:56 PM)
how old is everybody 35 here

Steve1 (Mar 8, 2010 8:35:05 PM)
60 here and there

AmberB (Mar 8, 2010 8:36:40 PM)
my mom has myasthenia, 4 kids. 1 with mito, arthrogryposis, gastroschisis, and amyoplasia, 3 maybe mito's- one is armless

AmberB (Mar 8, 2010 8:36:43 PM)
i am 29]

matt-p (Mar 8, 2010 8:37:13 PM)
awww

Steve1 (Mar 8, 2010 8:37:33 PM)
so matt, does your sci come from an actual trauma?

AmberB (Mar 8, 2010 8:38:17 PM)
what, as opposed to an imagined one?

AmberB (Mar 8, 2010 8:38:38 PM)
sorry, had to say it. im a smart a$$ at heart

matt-p (Mar 8, 2010 8:38:55 PM)
yes fell off dads big truck landed on a concreat block dead center my back

AmberB (Mar 8, 2010 8:39:08 PM)
ouch!!!

Steve1 (Mar 8, 2010 8:39:19 PM)
I meant, due to some outside event.

matt-p (Mar 8, 2010 8:40:13 PM)
i did get one good thing out of it in the last year my new w/c is like a lazy boy on wheels

AmberB (Mar 8, 2010 8:40:22 PM)
i get it. i have an interesting sense of humor because of my unique life. sorry if i offended anyone

AmberB (Mar 8, 2010 8:40:43 PM)
nice. my daughter has a permobil.. they are pricey

matt-p (Mar 8, 2010 8:41:20 PM)
mine is not power chair

AmberB (Mar 8, 2010 8:41:30 PM)
she is starting to outgrow it. seat raises so she can look me in the eye and lowers to the floor

matt-p (Mar 8, 2010 8:41:36 PM)
dont like power chairs

matt-p (Mar 8, 2010 8:41:50 PM)
neat

AmberB (Mar 8, 2010 8:41:56 PM)
so u have full arm use?

Steve1 (Mar 8, 2010 8:42:07 PM)
We're all unique, I think everyone here is trying all the time not to get offended. Coincidentally, my dinner is ready, gotta go. See you both again here, matt and amber.

matt-p (Mar 8, 2010 8:42:18 PM)
not full use no

AmberB (Mar 8, 2010 8:42:19 PM)
bye steve

Steve1 (Mar 8, 2010 8:42:28 PM)
(This user has left DigiChat)

matt-p (Mar 8, 2010 8:42:54 PM)
i feel safer being pushed

matt-p (Mar 8, 2010 8:43:32 PM)
with parkinsons i lock up and cant get arms to do what i want

matt-p (Mar 8, 2010 8:44:02 PM)
have tried power chairs and did not do well

AmberB (Mar 8, 2010 8:44:09 PM)
i try to watch the resarch on sci to see if any of it will benefit my girls in the future. thanks to christopher reeves and military guys it gets a lot of publicity and $

matt-p (Mar 8, 2010 8:44:27 PM)
yes

matt-p (Mar 8, 2010 8:44:41 PM)
what happend to your girls

AmberB (Mar 8, 2010 8:44:42 PM)
is the parkinsins and the sci related?

matt-p (Mar 8, 2010 8:45:00 PM)
no

matt-p (Mar 8, 2010 8:45:22 PM)
parkinson is from farm chemicals

AmberB (Mar 8, 2010 8:46:06 PM)
My 7 year old was born with arthrogryposis (joint contractures), intestines outside of body, no muscles in arms, club foot, and has some form of mito, but they arent sure what kind.

matt-p (Mar 8, 2010 8:46:13 PM)
dad farmed and i had to help all i could

AmberB (Mar 8, 2010 8:46:54 PM)
ya, that is an unfortunate combination

matt-p (Mar 8, 2010 8:47:13 PM)
was great help till i fell

AmberB (Mar 8, 2010 8:48:18 PM)
my 6 yr olds are genetic identical twins, but one was born without arms. the other has a right hemisphere brain disorder. and I have a 5 yr old that is typical except they think all have mito.

AmberB (Mar 8, 2010 8:48:27 PM)
and my mom has Myasthenia gravis

matt-p (Mar 8, 2010 8:48:53 PM)
awww

matt-p (Mar 8, 2010 8:49:38 PM)
you have your hands full

AmberB (Mar 8, 2010 8:49:57 PM)
so they think mito and parkinsins are related? just trying to make the connection in my head.

AmberB (Mar 8, 2010 8:50:32 PM)
yes I do. But it is cool. Intense. The highs are really high, and the lows are really low.

matt-p (Mar 8, 2010 8:50:35 PM)
thats what i was told here by a chatter cnant think her name right now

matt-p (Mar 8, 2010 8:51:11 PM)
they all are still a great joy i am shure

matt-p (Mar 8, 2010 8:51:38 PM)
its amazing how they stay so happy

AmberB (Mar 8, 2010 8:52:01 PM)
definately. they are all so unique

matt-p (Mar 8, 2010 8:52:41 PM)
are you on facebook

matt-p (Mar 8, 2010 8:52:59 PM)
or the my mda

AmberB (Mar 8, 2010 8:53:19 PM)
but as they get older they go thru depression. 7 yr old has gone thru it, twins are getting there

AmberB (Mar 8, 2010 8:53:32 PM)
facebook

matt-p (Mar 8, 2010 8:54:05 PM)
i am on facebook and have a pic there you are welcome to add me there

AmberB (Mar 8, 2010 8:54:51 PM)
my mda is sleeplessmomof4

matt-p (Mar 8, 2010 8:55:21 PM)
ok cool i am there to my pic is there also

AmberB (Mar 8, 2010 8:55:25 PM)
had to check it to remember because I haven't been on in 6 mos since I signed up

matt-p (Mar 8, 2010 8:55:54 PM)
cool

matt-p (Mar 8, 2010 8:56:19 PM)
my w/c is an invacare solara

matt-p (Mar 8, 2010 8:56:30 PM)
i love it

AmberB (Mar 8, 2010 8:56:54 PM)
cool. i dont know how to add to my mda

AmberB (Mar 8, 2010 8:57:35 PM)
can u add me?

matt-p (Mar 8, 2010 8:58:27 PM)
i am workin on it now

AmberB (Mar 8, 2010 8:58:50 PM)
brb- have to help a kid get to bed

matt-p (Mar 8, 2010 8:59:27 PM)
ok

AmberB (Mar 8, 2010 9:00:12 PM)
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AmberB (Mar 8, 2010 9:03:05 PM)
(This user has entered Mitochondrial Chat)

AmberB (Mar 8, 2010 9:03:24 PM)
oops

matt-p (Mar 8, 2010 9:03:49 PM)
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AmberB (Mar 8, 2010 9:04:44 PM)
(This user has moved to Living with ALS 2)

AmberB (Mar 8, 2010 9:06:13 PM)
(This user has entered Mitochondrial Chat)

AmberB (Mar 8, 2010 9:06:30 PM)
(This user has entered Mitochondrial Chat)

AmberB (Mar 8, 2010 9:06:30 PM)
(This user has moved to Mitochondrial Chat)

AmberB (Mar 8, 2010 9:06:35 PM)
hello

AmberB (Mar 8, 2010 9:06:43 PM)
(This user has moved to Living with ALS 2)