12.28.2005
09:45 PM - 11:15 PM EDT
SupportCenter / MyotonicChatGroup

vdoman -- {welcome vdoman}
marciamellows -- {welcome marciamellows}
vdoman -- Hi MM poker lady
marciamellows -- I was at Ed and Alice's today and they gave me a copy of "Reaching Out". Very impressive looking, although I have not had a chance to read the articles yet.
bette -- {welcome bette}
marciamellows -- Do you know when "Reaching Out" is being mailed?
paray -- {welcome paray}
marciamellows -- Hi Bette. How are the ribs and depression doing?
marciamellows -- Hi paray. How is Ann. I assume that she is home from the hospital.
paray -- Good evening girls and guy.
bette -- MM, I've been trying to get hold of Alice and she is not responding. Are she ad Ed alright?
marciamellows -- I have not been on the chat for two weeks and I really missed everyone.
paray -- She is pretty much back to normal, whatever that is. LOL
vdoman -- Reaching out was being mailed out this week
marciamellows -- bette, Ed and Alice are doing great! She has had a lot of family in for the holidays.
bette -- What did Paige do with the baby while you were out of town?
rockcandy -- {welcome rockcandy}
babykayla -- {welcome babykayla}
vdoman -- Hi Lisa How is Kayla doing
bette -- My ribs and depession seem to be under control. Now I have shingles. Newt year will be better.
marciamellows -- Paige is on winter break from teaching. Thats why we went now.
babykayla -- Hi Everyone!
paray -- Hi Susy and Lisa
rockcandy -- hi ray
marciamellows -- Bette, I understand tht shingles are related to chicken pox and very painful. Anything you can do for them?
paray -- MM..How was the fund raiser in Vegas?
marciamellows -- Hi lisa. How is Kayla doing? Any new milestones?
bette -- I'm lucky, I'm not in too much pain and the blisters are localized so far. I'm taking an aniviral pill that the dr. prescribed.
vdoman -- Shingles is adult form of chicken pox
bette -- Never had chicken pox, guess I'm finally growing up.
marciamellows -- paray, I hit a Royal Flush on a progressive 25 cent draw poker machine and won $1,563.10. We were in Vegas in March and I won $1,444.81 at the same bank of 6 machines. Can't wait to go back!
julie -- {welcome julie}
bette -- Not too shabby Marcia.
marciamellows -- Hope everyone had or is still having a good holiday. Anyone do anything special?
babykayla -- Hi MM, long time, huh? Kayla is doing so well. We got the best news ever the day before x-mas. Her pulmonologist said he feels that she is strong enough to try some trials off of the vent during the day.
rockcandy -- hi jule
babykayla -- we are taking her off for half an hour spurts 3 times a day
lost1112 -- {welcome lost1112}
paray -- Lisa...Do you have a pulseox?
rockcandy -- god news lisa
marciamellows -- Lisa, that is wonderful news. Have you tried her off the vent yet?
lost1112 -- hope everyone had a great christmas or holiday
bette -- Lisa that's terrific. Lost did you get the info I sent you?
rockcandy -- hi lost
barryc -- {welcome barryc}
paray -- Hi Julie and Lost
marciamellows -- Hi lost1112. I am marciamellows. Have not been on the chat for 2 weeks. Can you tell me a little something about yourself.
julie -- Hi suzie and all. Hope all had a nice holiday. Hey MM you really hit it big. Good for y0u.
paray -- Hey Barry
rockcandy -- hi bary
babykayla -- hi paray, yes she is on a pulse ox monitor
lost1112 -- hello all and hi barry
gypsy -- {welcome gypsy}
barryc -- hi lost, paray, and everyone
rockcandy -- hi gypy
babykayla -- MM, yes, 3 times today already
gypsy -- hi all
bette -- Hi Gypsy. How was your holiday?
rockcandy -- sorry i ment gypsy
paray -- It must be summer somewhere....LOL
vdoman -- MM is the winnings going in MDASAAG hawaii support group Hawaii trip? LOL
babykayla -- Kayla's sats don't change a bit when she's off, she just needs more suctioning. What a little champ!
marciamellows -- Lisa, that is really great news!
gypsy -- holiday ? all the day are the same to me
babykayla -- She's also tracking really well now and working on holding her head up.
gypsy -- thats ok rockcandy it is here paray
vdoman -- AWESOME LISA and KAYLA!
barryc -- GREAT NEWS, babyk... we are with you
gypsy -- thats great kayla
babykayla -- Kayla has been vocalizing around her trach a lot lately. Is that normal?
lost1112 -- thats wonderful news
jerisy -- {welcome jerisy}
gypsy -- it is summer here Paray
gypsy -- hi jersey
babykayla -- I thought you need a passey muir (sp?) valve to make sounds with a trach.
julie -- That's sounds exciting lisa. Some light at the end of the tunnel.
rockcandy -- hi jrsy
barryc -- hi ms SF...been a while... I suppose you a leading the fast life in CA land.
marciamellows -- Hi Jerisy!
babykayla -- Does anyone have any experience they can share with me about this?
ali-cat -- {welcome ali-cat}
julie -- Jerisy it's been a while.
marciamellows -- Jerisy, did you receive the chat reminder?
jerisy -- Hi Everyone.. it has been a while. Happy New Year to you all.
paray -- Lisa..That would mean that the air is going past her vocal cords rather than thru the tube.
rockcandy -- welcome back ali-cat
jerisy -- MM... No I did not receive reminder but I remembered.
elliebedelia -- {welcome elliebedelia}
gypsy -- does anyone want to geuss where i am talking to you today from ?
gypsy -- hi ali-cat
vdoman -- Hi Jerisy
rockcandy -- hi ellie
paray -- Lisa..Does she use inner canulas in the trach tube?
lost1112 -- hi ellie
barryc -- gypsy... are you in some dark, forbidden place?
bette -- Hi Ali-cat. I think you have been here before but I'm not sure. Please refresh my memory.
vdoman -- Where Gypsy?
marciamellows -- gypsy, I can't even guess.
lost1112 -- i bet it is somewhere warm
jerisy -- OK gypsy. I,ll guess. A hot air balloon.
elliebedelia -- Good Evening everyone
lost1112 -- no sky diving
paray -- Gypse..Hope it is not Florida
ali-cat -- I've been before, but it has been awhile--been busy.
vdoman -- Hi Ellie
babykayla -- Ok Gypsy, are you on a warm beach somewhere?
julie -- Hey gypsy, sounds like you need some cheeing up.
mommy -- {welcome mommy}
babykayla -- Are you in the US?
elliebedelia -- Its 25 here and expecting another big freezing rain storm
julie -- Hi ellie.
gypsy -- lol jersey I am scared of heights
lost1112 -- Australia
babykayla -- Hi paray, what are inner cannulas in the trach tube?
marciamellows -- lost1112. I send out chat reminders every week (almost). If you private message me your E-Mail address I will put you on the list.
vdoman -- Hi Mommy how is ta-ching Las Vegas
barryc -- well ellie... dress WARM
elliebedelia -- gypsy you are keeping us all in big suspence
gypsy -- has something to do with the present santa left me :o)
lost1112 -- great thanks
rockcandy -- hi mommy
mommy -- What is everybody talking about?
gypsy -- hi mommy
babykayla -- Hi mommy, I don't think we've met before. I'm Kayla's mom, Lisa
gypsy -- hi elle warm here
elliebedelia -- gypsy give us another clue
bette -- Gypsy, did you get your own cumputer?
babykayla -- Ok, Gypsy, where are you?
lost1112 -- well ellie i was going to ask how things were going in the white mountains but you just told us so i wont lol
elliebedelia -- thats a great guess bette
gypsy -- I am in my flat today
jerisy -- Hi Mommy
julie -- You got youur own computer.
julie -- You got youur own computer.
gypsy -- good guess bette:o)
elliebedelia -- hey lost you must have the same forcast
mommy -- Lisa, I talked to u on the phone a while ago. I am Sondra
jerisy -- Flat is an apartment. Where is it
gypsy -- yes julie
julie -- YOuu got a new apartment?
barryc -- gypsy,,, tell us about your new digs
steelydon -- {welcome steelydon}
vdoman -- Gypsy you have your own place and computer!
lost1112 -- england
babykayla -- Hi Sondra! How are things going with Raina?
steelydon -- Hello all
gypsy -- live where i always did not mine but the computer was a present form Santa
lost1112 -- well am i right Gypsy
jerisy -- Did you take the animals with you gypsy
elliebedelia -- hi steely
rockcandy -- hi steelydon
mommy -- She's doing good. Did u find out if you have mmd?
barryc -- hi steely... st. pete finally warming up!
marciamellows -- Lost, where do you live and are you on the list to receive "Reaching Out" either electronically or by snail mail?
gypsy -- hi steelydon
steelydon -- Hi rock an barry
vdoman -- Hi steelydon
steelydon -- yep barry feels better
steelydon -- Hi vdo
elliebedelia -- well thats great news gypsy Santa was good to you and you must have been a very good girl this past yr!!
jerisy -- Oh Gypsy. That is so cool. I am happy for you
lost1112 -- thats the news letter right i do receive that by email
barryc -- babyk... Ray's input... did it answer your question?...
marciamellows -- Wonderful article about Terry in the St. Petersburg paper!
gypsy -- sorry typing too slow haven't move always lived here just had to go out to use computer before
steelydon -- Hello ellie
steelydon -- hello marcia thanks for the reminder
mommy -- Lisa, Are you home now with Kayla
rockcandy -- good hews gypsy
barryc -- gypsy... are you drinking wine, beer,or harder stuff tonight?
gypsy -- don't think i was too good think he must have made a mistate but i am not going to complain
mommy -- That would be great.
babykayla -- mommy, yes, we came home on the 8th of Nov. I've been wanting to catch up with you.
gypsy -- lol barry not making much sence arn't I
jerisy -- What are you talking about. Take the present andenjoy.
marciamellows -- Lost, yes I got it. Where are you from?
mommy -- me too
steelydon -- Hi gypsy
elliebedelia -- did you get my card bette , when I sent it I didn`t have your last name sorry
lost1112 -- vermont and let me tell you it is cold
marciamellows -- mommy, my husband and I just returned from Las Vegas.
barryc -- that's ok gypsy... your as sensible as you want to be, and that is ok with me.
gypsy -- thanks to anyone who sent me card wasn't at all organised this year didn't get any sent
robyn-g -- {welcome robyn-g}
marciamellows -- lost, are you married, children, how old are you?
elliebedelia -- lost are you in for the freezing rain tonight and tomarrow like we are?
mommy -- Marcia, did you like it? My husband runs the pirate show at Treasure Island
barryc -- marcia... I am going to tell the IRS on you if you don't behave yourself.
gypsy -- hi robyn
bette -- Ellie, I got two cards from you. Thanks for thinking of us. I plan to send cards every year and never get around toit.
vdoman -- We had some rain today got down to hi 50's a little chilly
rockcandy -- hi robyn
robyn-g -- hi gypsy
robyn-g -- Hi everyone
barryc -- hi robyn... welcome aboard.
lost1112 -- not sure yet have not watched the weather yet just got back from seeing docs at white river
steelydon -- hi robyn
vdoman -- Hi Robyn
mommy -- It's been in the 70's in Las Vegas
lost1112 -- hey robyn
gypsy -- wanted to tell everyone how great it was to be able to use a computer from home will make it much easier:o)
marciamellows -- mommy, Vegas is my favorite place. We go often. The pirate show is great!
vdoman -- Rain is coming your way Mommy
julie -- Hi robyn.
elliebedelia -- hi robyn
mommy -- I love rain
lost1112 -- well just to keep all of you updated it has been in the uper 30's here
ali-cat -- it sounds like I have a fellow las vegan in the chat--mommy i'm ali-cat.
babykayla -- mommy, how's Raina?
jerisy -- Lost.. where are you from
marciamellows -- robyn, I read the transcripts last week. I thought that Joe had 2 teenage daughters and you had 2 teenage daughters. You mentioned a 10 year old boy named Alex on last weeks chat.
mommy -- where is everyone from?
lost1112 -- Vermont
elliebedelia -- well bette I did do exceptionally well this yr to get some out. But I didn`t get up many decorations
gypsy -- have to get a better set up yet so it will be easier to type and better for my back than the chair i have
steelydon -- florida here
babykayla -- Sacramento, CA
robyn-g -- Yes, MM - we have five total. I have a teenage daughter and teenage son. Joe has a teenage daughter and we each have a ten year old - his is a girl, mine is a boy.
gypsy -- australia
marciamellows -- robyn, I mean that Joe has 2 daughter and you have 3 not 2.
mommy -- Raina is three now and beginning to talk in senteces. She still may need hip surgery
vdoman -- Fresno, Ca Mommy
lost1112 -- i was right Gypsy ok what do i win
jerisy -- Lost.1112.. are you familiar with a little town Shoreham 13 miles outside of Middlebury?
bette -- North Hollywood Ca.
mommy -- Thanks for the e card vdoman
kshirk -- {welcome kshirk}
elliebedelia -- I know Middlebury
marciamellows -- robyn, I do not know why but I just assumed that they were all girls. So you have 3 girls and 2 boys.
julie -- Well, gypsy, does that mean we will hearing from you more often?
kshirk -- Hi everyone, this is my first time on the chat
gypsy -- yes you were lost but I have always been in australia so that is only new to those who do not know me
vdoman -- Your Welcome Merry xmas
elliebedelia -- mommy I am from the White Mountains of NH
gypsy -- hi kshirk
lost1112 -- middlebury i have heard of but not the other
robyn-g -- Welcome Kshirk - introduce yourself, please.
steelydon -- hello ksh
gypsy -- I hope so Julie :o)
kshirk -- My mom was diagnosed with MMD last Tuesday at age 58
kshirk -- My sister and I are being tested hopefully soon, but there is some red tape regarding paying for the tests
jerisy -- Ellie... we had a cousin who ran the Shoreham Inn Bed and Breakfast. Beautiful country
rockcandy -- wecome to the chat shrink
marciamellows -- Hi kshirk. Please introduce yourself. Do you have MMD? Where do you live?
kshirk -- I'm 26, my sister is 29. I don't have weakness but I did have my gallbladder removed this year; my sister has a tremor and diabetes
robyn-g -- Ok - outside of what is in the books about apathy -does this sound familiar to anyone? Janelle (13) seems to have a hard time really "caring" like - the other day - her glasses were lost - she knew they were lost, but didn't really care - it's like no big deal. I'm finding it somewhat frustrating to me when this happens.
kshirk -- I live in Orange County, CA. Mom has MMD, I'm not diagnosed yet.
elliebedelia -- Shoreham must be on Lake Champlain of near there
lost1112 -- just wondering does anyone know if i was to move from vermont to a warmer area if i would have less problems than i am now
mommy -- I am beginning to get facial wealnesses
mommy -- I ean weaknesses
lost1112 -- yes robyn i am very familiare
bette -- Robyn, I have that problem all the time. I still care that I don't care if that makes any sense.
barryc -- kshirk... you live in the hotbed of our MMD chatters... there are next door neighbors on this chat in your humble locale
robyn-g -- Wow - Kshirk - your mom was diagnosed just last week, and you already found the chat. Good For you! it helps to be informed and especially to have support.
julie -- Yes, robyn, apathey is definietly a asumptom. I have it too.
jerisy -- Ellie... give the lady a cigar . That is correct.
vdoman -- Robin, sounds like Kevin lost his game-boy said oh well I get a new one
lost1112 -- that is just how i feel as well
robyn-g -- Thanks, lost. It is so hard to know what is attributable to the mmd - and what is not. SUCH a FINE line.
kshirk -- Robyn - I think I am over-informed! I read some of the transcripts as well and have visited almost every site there is!
kshirk -- My only "symptom" would be gallbladder disease, and I find myself trying to guess whether I am likely to have it. Which is ridiculous.
elliebedelia -- lost I know that it is healthy to live in the 4 seasons but with these problems I think a warmer climate would be easier
lost1112 -- hey robyn thats what we are here for to share and learn
marciamellows -- kshirt, but we are the only site for MMD.
babykayla -- kshirk, there is a great book on MMD by Peter Harper. You should read it.
barryc -- well kshirk... you have found THE CHAT...friendly, charming, helpful, humorous, and here to help one another... I think we all agree on that.
bette -- kshirk, I think you found the best chat right here. We are friendly, open and willing to help with any questions you have.
robyn-g -- Kshirk- that is not ridiculous - considering your mom's diagnosis.
steelydon -- {goodbye steelydon}
mommy -- I have that book, Lisa. I got a lot out of it
kshirk -- babykayla - I fully intend to buy that book as well
gypsy -- there a many in different counrties marcia
kshirk -- I'm glad to be here! But I am also very scared.
lost1112 -- i only found this group two weeks ago and let me tell you the things i have learned in just two weeks
babykayla -- I have just read it again and got even more out of it than last time
mommy -- It cost me 89 dollars. The book
vdoman -- You are still young Kshirk and be thankful you do not have a lot of symtoms
gypsy -- i have also learned more from chat than any where else
jerisy -- We are here for you. It is so important to have a support system. Welcome.
robyn-g -- Just ask Ray, you can get the book at a discount, if you got to the oxford university publishing website, and enter a promo code. I got the big book, and the fact book both, for less than 90.
kshirk -- I think my sister is even more sure than I am that she has it... she has been diabetic for 10 years, has a horrible tremor in her hand and a lot of fatigue.
mommy -- My daughter is beginning to hve diahrea problems. She is only 3. The book says that will start after age 8
lost1112 -- ellie i have been thinking a lot of moving back south to see if i can get some relivfe
elliebedelia -- kshirk I my brother and I inherited it from my dad
kshirk -- HOw do I get in touch with Ray? Is he on?
robyn-g -- mommy - the one thing I've learned is how much this disease varies from person to person, even within the same generation (like siblings).
mommy -- I am still potty training Raina after a year and 4 months
marciamellows -- kshirk, have you and your sister been DNA tested?
kshirk -- ellie - do you mind if I ask when you were diagnosed
kshirk -- marcia - we called MDA this morning to arrange for it but the local clinic is out of grant money. We are going through another lab to be tested this month.
robyn-g -- Ray is probably on, "watching." Ray has been such an instrumental person in helping me get connected with the right info. I have the information, as well, he passed it onto me. I'd be glad to email it to you. if you private message me your email address.
mommy -- I am beginning to wonder if she has a weakness in the bladder and bowels.
vdoman -- Mommy Kev was not copletely toilet trained until he was 4 years
paray -- Alice arranged a discount for Harpers book. Promo code 24250. $63.20 including shipping.
mommy -- that is normal for a boy
robyn-g -- Thanks Ray :)
elliebedelia -- I was diagnosed 4 yrs ago and I am 52 yrs old and my symptems are progressing more each yr butr I am not scared I try to live each day to the fullest
kshirk -- Thank you Ray
babykayla -- mommy, have you seen a GI doctor about her weakness?
mommy -- I tried the promo and they said there was none and I ordered the book in November
elliebedelia -- mommy have you heard of the brat diet?
kshirk -- My mom is 58 and has 200 repeats... she has foot drop and some facial weakness, plus slurred speech
mommy -- I am going to look into a GI doctor. Can they test for that?
mommy -- I did the brat diet and it seems to help a little. She is not having problems now at this moment
jerisy -- Mommy-Can you contact the publisher directly?
babykayla -- mommy, not sure how they would test her but I'm sure there must be some way.
mommy -- I called Oxford press
elliebedelia -- my repeats kshirk are 234 and I have facial weakness. cateracs in both eyes, stiffness all over and use a walking stich and daytime fatigue is horrible
kshirk -- I got engaged only three days before we got the test results for Mom - bad timing! My fiance is supportive but I am still concerned about what will happen when we're ready to have children - adoption, PGD, etc. Anyone have experience with that?
bette -- kshrik, I have no idea what my repeats are but I do have all those symptons and more. If your mom is falling she may want to look into Orthotics. Mda will pay up to $2,000 toward the purchase.
paray -- Goto: www.oup.com/us and enter 24250 in the prom code box.
bette -- Congrats on your engagement.
mommy -- I have muscle spasms in my neck and the soreness lasts for months. I see a chirpractor and it helps a litle
rockcandy -- goodnite evereyoe cat next week have hqppyb new year
kshirk -- Thanks bette - it was sort of a bittersweet time.
vdoman -- Suzy has 1200 repeats and our son has 1333 repeats He is CMMD
elliebedelia -- good advice bette and I had to pay for my own testing I know the blood test was about $350.
jerisy -- Contact adlibis.... they locate books for sale
barryc -- happy new year to you rockcandy....
mommy -- I plan on going through PGD in April for my second child
rockcandy -- {goodbye rockcandy}
kshirk -- Those of you who have facial weakness - is it significant? My mom just seemed to have aged quicker than most women her age...
lost1112 -- Kshrik cograts on the engagement i cant help you on the kids because i cant have any but good luck
lost1112 -- mine is not bad just their
mommy -- I had my first by IVF before I knew I had mmd
kshirk -- mommy - and your first child is affected?
paray -- Hey Barry...Very good article in the St Pete Times about Terry.
babykayla -- kshirk, I am looking into PGD right now since I had Kayla and want to have more children. I can tell you about it when I find out more
kshirk -- thanks babykayla
marciamellows -- What is PGD?
ali-cat -- kshirk-you sound like an awesome son. I was just diagnoised in Sept. and still dealing with the depression. I pray for you and your sister--best of luck on your tests.
bette -- What is PGD?
barryc -- thanx Ray...glad you enjoyed the article. Did the photos come through for you?
robyn-g -- Anyone care to explain PGD?
kshirk -- I understand it costs up to $18,000 - around the cost of adoption
elliebedelia -- that was my next question mm also
robyn-g -- Barry - the article was great. and the photos did not come through on one email, but I was able to see them on the link to the article.
kshirk -- ali-cat - i'm actually a daughter! I have been up and down since the diagnosis. Mostly down, but I'm trying.
paray -- Pixs came through when you told me how to find them. LOL
kshirk -- PGD is preimplantation genetic diagnosis
mommy -- I also looked into adoptin. PGD is cheaper. It will cost about 14,500 minus the cost of drugd
elliebedelia -- I have 3 kids and it was before I knew
vdoman -- Kshirk remember that with MMD has a much higher chance of having a Cogenital MMD baby than a man with MMD
vdoman -- woman
kshirk -- {welcome kshirk}
bette -- Kshirk, my facial weakness means no smile and weak eyelids. I seem to look younger because I have no smile lines.
julie -- Congrxats pu you engagement. Don't dwell on cildren until you learn if you have it. Then it is up to you and your fiance about children.
vdoman -- Wb Kshik
ali-cat -- is PGD like invitro? They can test for MMD on the eight cell divide--as i've read.
jerisy -- Need to say goddnight and wish you a Happy New Year with a Cure on the Horizon.
jerisy -- {goodbye jerisy}
elliebedelia -- bette I have no smile also and droopy eyelids and people tell me I look very young
mommy -- There is s risk of miscariage if a woman with mmd gets pregnant. A high risk
lost1112 -- everyoone just thinks i am not happy all the time no smile either
kshirk -- PGD is in vitro but with the genetic testing before implantation.
barryc -- kshirk... have you and your sister been tested for MMD?
bette -- PDA sounds promising.
robyn-g -- When people tell Joe he looks tired or that Jessica looks tired, Joe responds with "that's just the look I was going for." you got to have a sense of humor.
kshirk -- mommy - I've read that as well... but it's also a question whether the miscarriage is due to an embryo with CMMD
mommy -- I also have no smile and I have been told I look young. My daughter slee[s with her eylids half open
lost1112 -- but with balding i do nopt look young lol
elliebedelia -- yes lost people ask me whats the matter? Why are you sad?
babykayla -- mommy, I had no idea how expensive PGD was. Wow!
kshirk -- barry - not yet. we started the process today.
kshirk -- So if you try to smile nothing happens?
mommy -- It can be due to a hemorrage in the uterus because the uterus is 80 percent muscle
robyn-g -- When Joe smiles, he has to really force his mouth into that position.
kshirk -- This is interesting... I would never tell my mom this, but she definitely has a lot of wrinkles! She smiles, but when she isn't smiling her mouth is very turned-down.
lost1112 -- looks more evil than a true smile for me kshirk
mommy -- Lisa, that price is with a 5,000 dollar discount too
gypsy -- thats great robyn but sometimes i do wish i looked tired everyone is always telling me that i look well when i feel awful
bette -- I can make a half-smile.
elliebedelia -- well my lips just go straight out they do not look like a smile and sometomes looks more like a frown then a smile
kshirk -- Did you notice the facial weakness very early on?
robyn-g -- Those of you with facial weakness, does your face get "stuck" a lot? Joe is always told he has a "mild" case, but his face gets "stuck" all the time. - along with the slurred speech.
mommy -- My daughter couldn't smile until she was 2 and a half
lost1112 -- early twenties for me
kshirk -- What I wonder is whether the internal organs that can be affected would be affected before or after other signs, like facial weakness or distal weakness.
bette -- Gypsy, Make and I are talking about getting to Austrilia after he retires in 2007. We'll keep you informed.
bette -- That was Mark, not Make
kshirk -- I've been trying to figure out when my mom first showed symptoms. She had trouble delivering both of us and had C-sections, but other than that nothing until a few years ago.
gypsy -- ok thanks bette
lost1112 -- face does get stuck but usally i know it is going to happen and can fix it before anyone else sees it robyn
robyn-g -- I'll talk to you all next week. Keep us posted Kshirk, and good luck. Have a safe and happy new year.
bette -- Distal weakness comes first.
vdoman -- Suzy and Kev sleep with eyes half open has caused a lot of problems with dry eyes
marciamellows -- mommy, what and where do you t each in LV? I assume that you teach in Clark County.
gypsy -- bye robyn take care
elliebedelia -- kshirk my doctor keeps a close watch on my heart, ekg every yr so far, so good you know almost everything we are made up of muscles
lost1112 -- my first sympotom was relaesing hand grip
mommy -- So far, I have no internal signs of mmd. Just in my hands and face
kshirk -- vdoman - can eye drops help or eye patches at night?
lost1112 -- bye robyn
ali-cat -- kshirk my first symptoms were fatigue (when I was 17)and the inability to realease a grip at 26 i developed IBS and at 31 developed the muscle weakness in my legs--and at 36 diagnoised. My mom was diagnoised the same time at age 65.
bette -- I sleep with my eyes partially open too. Do Suzy and Kevin use sleep masks?
kshirk -- ellie - that's why I think I may test positive, because of my gallbladder not functioning. otherwise i haven't noticed any weakness.
babykayla -- vdoman, Kayla sleeps with her eyes open slightly too
robyn-g -- {goodbye robyn-g}
julie -- Bye bye robyn.
kshirk -- ali-cat my mother sleeps all the time, and has for as long as i can remember. Of course the wine doesn't help. :-)
mommy -- Raina sleeps with her eyes partially open
vdoman -- Suzy has to make constant effort to blink and use drops eye patch does not keep lid closed
elliebedelia -- is the gall bladdsr a muscle?
barryc -- kshirk... I don't think gall bladder problems are related to MMD. At least I have not read that.
kshirk -- It's listed on the MDA Q&A as being a potential symptom...
elliebedelia -- I agree barry
julie -- Is gall bladder problems a symptom of MMD?
lost1112 -- yes gall bladder problems do have a realoinship to MMD
kshirk -- The gallbladder squeezes bile into the duct leading to the liver.. mine was not squeezing, basically.
elliebedelia -- I have just never heard that but am glad for that info
lost1112 -- more gall stones than actuall problems
gypsy -- i had gall bladder problems but my doctor didn't think that they were related but i don't have mmd
sillysally -- {welcome sillysally}
kshirk -- I am just so grateful they correctly diagnosed my mom - two other doctors had insisted it was ALS
kshirk -- gypsy - gallbladder problems are pretty common in this day and age
elliebedelia -- hi sillysally
vdoman -- pg 119 of Harpers book talks about gall bladder problems with MMD
sillysally -- hi all..
mommy -- pregnancy can cause gall stones
gypsy -- hi sillysally
kshirk -- vdoman - just stones or disfunction as well?
bette -- I have gall "gravel" The Dr. assumes it will become stones eventually.
elliebedelia -- I have to get that book vdo
kshirk -- hi sillysally
sillysally -- This is my first time to the chat room..Thought I would check it out
lost1112 -- alot of things seem to cause gall bladder problems
kshirk -- i'm new as well silly
vdoman -- dysfunction Suzy had hers removed
babykayla -- hi sillysally
mommy -- anybody here with a three year old with cmmd?
lost1112 -- welcome silly
barryc -- sillysally...tell us a little about yourself
bette -- Hi Silly. Hope you find us to be what you are looking for. Please tell us alittle bit about yourself.
julie -- Hi sally tell us about yourself.
babykayla -- Do you or someone you know have Myotonic MD?
sillysally -- i have a six year old with mmd
kshirk -- vdoman - how old is Suzy, if you don't mind me asking?
babykayla -- silly, was your child diagnosed at birth?
sillysally -- just looking for more info
vdoman -- We have a 23 year old with CMMD does that count and Suzy is 48
sillysally -- no 2 years ago
babykayla -- silly, I have a 5 month old with CMMD.
marciamellows -- silly, what are your child's symptoms?
babykayla -- Diagnosed at 46 days after birth
bette -- Silly, you have come to the right place. Please feel free to ask whatever questions you have. We will do our best to answer.
elliebedelia -- you can find a lot of info here silly and we are all willing to help out as much as we can
sillysally -- repeat of 300...he currently isn't having any symtoms
juniexoxo -- {welcome juniexoxo}
vdoman -- minimal repeats
babykayla -- hi silly, how did you figure it out if he didn't have symptoms
marciamellows -- silly, if he currently is not having any symptoms why was he tested? Where are you from?
sillysally -- i had my son tested because his dad was diagnosed with repeat of 130
mommy -- my daughter has a repeat og 1400
babykayla -- has he ever had symptoms?
elliebedelia -- good night my eyes are very tired and its 10 pm here
gypsy -- hijuniexoxo
babykayla -- Kayla has a repeat of 2307
juniexoxo -- hi gypsy
gypsy -- bye elle take care
barryc -- stay warm ellie...
lost1112 -- night ellie
sillysally -- I'm from ND
mommy -- I have a repeat of 400 and I am considered mild
lost1112 -- stay warm
kshirk -- bye ellie
ali-cat -- Do you have MMD sillysally?
bette -- Hi Junie, haven't seen you for awhile. How have tings been?
babykayla -- night Ellie
vdoman -- Suzy has 1200 repeats and Kevin has 1333
elliebedelia -- you too lost
juniexoxo -- i know...I am so tired at night
lost1112 -- well night all see yall next week happy new years
sillysally -- no..my son's dad does and some of his siblings
ali-cat -- I have repeats of 140 and was diagnoised with DM1 (the most severe).
elliebedelia -- {goodbye elliebedelia}
julie -- GN ellie
babykayla -- silly, when was your son diagnosed?
kshirk -- ali-cat - those are relatively low repeats, though, right?
julie -- Bye lost
vdoman -- Repeats do not necesarily mean severity although the higher the number the more affected
sillysally -- so do any of you do much research on the sten cell topic of cures or etc?
gypsy -- bye lost take care
lost1112 -- {goodbye lost1112}
ali-cat -- kshirk compared to some I think 140 is great--but my nuerologist keeps telling me not to focus on numbers.
sillysally -- my son was diagnosed almost 2yrs. ago
barryc -- that's a good question, silly..I don't think stem cell work is going on the MMD... any one know for sure?
mommy -- over 99 is a full mutation.
kshirk -- ali-cat - that's true, since the numbers aren't necessarily a direct correlation...
bette -- I personally have not done any research.
marciamellows -- silly, MMD is usually less severe if passed on from the father than the mother.
kshirk -- barry - i read that they are exploring it in terms of repairing damage already done
mommy -- between 5-38 is normal
barryc -- I think there is a lot of variation in severity for repeats, especially mid range
sillysally -- I am expecting a baby and was thinking of banking the umbilical cord for future use in needed for the stem cells
babykayla -- I've been doing some research. They have a way for "molecular scissors" to shorten the repeat length
babykayla -- I don't think they have tested any humans yet though
kshirk -- silly - have you had the baby tested as well?
juniexoxo -- Silly i banked my last babies cord blood
mommy -- If I do the PGD, I plan on donating y extra embryos to stem cell research
mommy -- my
kshirk -- babykayla - it's encouraging though... i am hopeful they will come up with something in the next 15 years
sillysally -- so is it worth me to save the cord??where did you bank yours?
vdoman -- MDA Researchers Treat Cause of Myotonic Dystrophy in Mice QUEBEC, Oct. 19, 2005 – A multinational team that included MDA grantee Jack Puymirat of Laval University in Quebec targeted toxic genetic information that causes myotonic muscular dystrophy in mice with the disease, using two new molecular techniques, the Muscular Dystrophy Association announced today. The experimental treatment could be tried in humans in about three years. The two techniques the researchers used are aimed at breaking up or destroying specific strands of RNA and they both represent a potentially effective approach to treating certain types of Dystrophy
bette -- Silly, that sounds like a good idea for almost anyone. You never know what is going to happen in the future.
kshirk -- It would be hard to believe that they can't find a cure by 2020!
kshirk -- silly - i've read that it's relatively inexpensive so there isn't a reason to "not" do it
sillysally -- hve not had the baby tested as my husband doesn't have mmd..my oldest childs father does
juniexoxo -- I use Cordblood registry.or CBR
bette -- kshirk, I would be happy if they just found a treatment by then.
juniexoxo -- it cost me 1500 dollars to bank the blood and 95 a year
babykayla -- silly, I was supposed to do umbilical cord banking but I had an emergency c-section and they tossed it out before I could say anything
kshirk -- bette - of course. can you imagine what it would mean for everyone if some of the damage could be reversed?
mommy -- If a cure is found, can it help people who already have it or will it just be a preventative cure like vaccines for chicken pox?
kshirk -- silly - has your baby been tested as well?
kshirk -- mommy - it sounds like they are trying to "fix" people who already have it as opposed to preventing it in the first place
sillysally -- yeah I let the doctors her know as I am currently on bedrest in the hospital and will nedd up having an emergency c-section or if lucky a day notice..
kshirk -- I have a question about personality changes... is that something that gets progressively worse or is it something where if you have them, you have them and they stay the same?
mommy -- if you have mmd, you have to have a c section. You are at risk of hemorraging to death
babykayla -- well everyone, Kayla is hungry and crying so I need to go feed her. It was nice chatting. I hope the 2006 brings lots of wonderful research findings for MMD. Hope you all have a wonderful New Year's.
sillysally -- thanks for the advice about the cord banking...
kshirk -- babykayla - night!
juniexoxo -- nite babykayla
sillysally -- bye..happy new year!!!
bette -- I have question about the umbilical cord stem cells. If the mother in infected won't the stem cells already carry the defect?
vdoman -- goodnite Lisa
mommy -- my husband says my personality has changed
kshirk -- silly - i hope you don't mind me prying but does your baby have the repeats?
gypsy -- bye kayla take care
kshirk -- mommy - how so?
sillysally -- no
babykayla -- one quick question to those who have had babies with MMD. Did anyone else have retained placenta with your pregnancy?
mommy -- for the worse. kshirk
kshirk -- bette - that's a good question...
gypsy -- night all happy new year take care . hope to be able to come more often now :o)
julie -- Gn to all.
juniexoxo -- call the registry you are thinking about using they can tell you
bette -- I think my personallity has changed. I'm not so apt to want to plan ahead for trips and entertainment. I also just don't care a whole lot. I'm 58 but I don't think that is the reason.
sillysally -- gn
ali-cat -- about personality my husband claims I have depression--he might be right. Other than that I'm the same person.
kshirk -- is time up already? thanks for all of your help everyone...
vdoman -- Suzy had a C section and they removed placenta at that time
mommy -- I am grouchy and I say hurtful things without realizing it. Mybe it is because I have not worked in the las three years, I am a school teacher
bette -- We have another 15 minutes.
julie -- {goodbye julie}
juniexoxo -- I was like that..zoloft saved my life
ali-cat -- {goodbye ali-cat}
kshirk -- ali and bette - my mom definitely has had serious depression for years. My sister has depression as well. I have panic attacks. We are quite the family.
juniexoxo -- stress does it forme
bette -- I also have not worked for a long time and now I can't drive so I'm feelig isolated a lot
vdoman -- Suzy is depressed alot and very apathetic
mommy -- stress makes mmd worse
bette -- Depression is also a big part of this disease. Some people are on meds and it seems to help them.
kshirk -- bette - are you not driving because of eye problems or because of weakness?
vdoman -- Stress makes caregiving harder too
mommy -- I have not worked so I can raise my daughter. MMD doesn't hinder me much
sillysally -- ok..brb nurse is in the room
juniexoxo -- bette can you volunteer somewhere
gypsy -- I also have stress depression and panic attacks make worse by undx md
barryc -- some emotional patterns are very characteristic... depression, apathy... others dealing with frustrion, irritablity, and so on are more related to how you live with your condition,,,how you adapt and manage your symptoms and the support around you
bette -- I've done some volunteering but now the "not care" part is keeping me from doing anything. I've been spending a lot of time in bed lately.
kshirk -- My best friend who is 26 was diagnosed with MS this year. My dad has Inclusion Body Myositis, Mom has MMD and we possiby have it as well. I would be shocked if we weren't all a little stressed out!
vdoman -- Thanks Barry forgot we have a psche on the chat
babykayla -- bette, do you have good days and bad or do you always feel that way?