12.26.2005
09:45 PM - 11:15 PM EDT
MITOchat / MitochondrialChat

keuka -- {welcome keuka}
bug- -- {welcome bug-}
bug- -- hi keuka, how was your holiday ?
keuka -- hi bug. I had the flu the whole day but the sleep was good. How was your day?
keuka -- Where do you go to school. Bug?
bug- -- Sorry to hear that...i go to univ of michigan
bug- -- are you in a lot of pain ?
keuka -- That is a BIG school. Bet you are glad for a few days off
bug- -- about 50,000 students between the 3 campuses....i don't have any time off because i have school work to do from when i was in the hospital last month
keuka -- My legs are my problem mostly. I ache a little most of the time but when I can not eat then I get into a lot of pain. Arms affected then more so than most times too.
marie2354 -- {welcome marie2354}
keuka -- Just stay with it and it will eventually get done. My daughter has asthma and learned to stay as far ahead as she could for when she went down for a week or more.
keuka -- Hi Marie
bug- -- i was wondering if the flu was causing you more pain...i know that's usually the most common symptom
bug- -- hi marie
keuka -- Trust you had a good holiday?
keuka -- Yeah it definitely mad it worse. But I am coming out of it now. Feel more human today.
marie2354 -- hi I have a dAUG 23 SICK SINCE 9YRSOLDthey gave her 1month god is giving her her time and I jus care for her with all my love. Sorry happy holidays
bug- -- that's good keuka
keuka -- Marie hang in there. All we can do is love them and care for them to the best of our ability.
marie2354 -- she can not walk but does she get around . we almost lost her 4times this june was our 4th
keuka -- Do you have alot of work to make up Bug?
marie2354 -- my dilema right now is that doctor's have given up and she needs her gums cleaned and I can't get anyone to do it.
bug- -- yep and i still haven't fully recovered from my adrenal failure
bug- -- sorry to hear about the prognosis and all of her troubles marie
marie2354 -- she is in a lot of pain but when I take her to the er they give me vicodin and say ake her home
keuka -- Marie, have you checked with a dental clinic or a chidrens dentist? Often a pedodontist will do things that a regular adult dentist might not
marie2354 -- she has gingivitisi from the dilantan other than that she does what she wants
jennifer-s -- {welcome jennifer-s}
keuka -- Try calling the local dental society--they should be listed in the yellow pages.
marie2354 -- yes with the best they are afraid I believe
marie2354 -- but do bot say a whole year of this
bug- -- marie is her diagnosis mito ?
jennifer-s -- hi all. I hope everyone had a nice Christmas
marie2354 -- yes mitrochodrial myopathy w 1 def
marie2354 -- she has a g-tube since aug04
bug- -- sorry, it's hard for me to keep track of everyone here
keuka -- I would call a pedodontist. I know they take care of "kids" with problems like that.
bug- -- hi jenn
keuka -- Hi Jenn. did you have a good holiday?
jennifer-s -- so so. I've been sick all week. getting better now though
marie2354 -- I have gone to one
bug- -- how was the trip jenn ?
marie2354 -- she is to old for Miami children which I know they would so I went to Jackson Mem and other to no avail
keuka -- most of the time they are trained to work with people who have problems such as you are describing
jennifer-s -- still in NY. its a bit crazy. my family can be a bit dysfunctional
jennifer-s -- marie I'm from Florida too
marie2354 -- the doctor top in his feild keeps giving excuses even though the nuero dr cleared her and the pcp dr
marie2354 -- where in fl
jennifer-s -- Bradenton
marie2354 -- my family is from ny to cold to go there for me
keuka -- Can they give her some pre medication prior to treatment that would make her comfortable and more? Have the neuro call the dentist and tell him she HAS to have her teeth and gums cleaned.
marie2354 -- is that in tampa
jennifer-s -- what part of NY are they from? and yes its cold
jennifer-s -- south of Tampa near Sarasota
keuka -- Sorry to hear you have had a poor week Jenn.
keuka -- Due to get colder as the week goes on.
jennifer-s -- there is a program in Florida call Florida Donated Dental for disabled people. maybe they can help you
marie2354 -- everyone knows the deal it's up to any dentist now to take the case or do the surgery she can aspirate and they fear it
bug- -- jenn do you have a virus or is it just the mito issues ?
marie2354 -- how to get in touch with them
jennifer-s -- i had strep and now bronchitis because i aspirate everything
jennifer-s -- i caught it from my family apparently the day i got here
keuka -- Good suggestion Jenn. You live there so you have contacts.
bug- -- did they give you an antibiotic for the strep ?
jennifer-s -- they have a website marie. i'm not on my home computer so i don't have the address here
keuka -- Sorry to hear you have been sick, Jenn.
jennifer-s -- thanks
jennifer-s -- prey Em doesn't get it. she has no insurance here
jennifer-s -- Wednesday is good for hanna and I keuka
marie2354 -- thank god my daug does not get sick other than her mitoplease if you get it send to annmaryjackson@aol
jennifer-s -- they gave me clindomycin which I've never taken. seems to work though
keuka -- Sounds good to me. Where do you wnat me and what time?
jennifer-s -- its up to you. we are in kenmore off colvin
keuka -- Bug are your problems straightened out now?
bug- -- jenn i've never heard of it either, but it's great that your on something...strep can cause permanent heart damage
marie2354 -- it's hard to see her suffer and I refuse to take her to er because they treat a dog better than her the nurses are great but they are only nurses and not doctors
jennifer-s -- i'll be home jan 3 marie. type it into your search engine and see if its there. this computer can't do 2 things at once lol
riley04 -- {welcome riley04}
jennifer-s -- hi riley
keuka -- Daughter has a map so I will find you. What time is good for you?
keuka -- Hey, Riley
bug- -- no keuka, i still have severe adrenal insufficiency and low blood pressure...just found out i have parathyroid insufficiency as well...seems my whole endocrine system is screwed up
jennifer-s -- whenever is fine. i have a car until 5:30 or so
bug- -- how sad marie
marie2354 -- jenn what mito do you have
keuka -- I am free the whole day so just let me know.
marie2354 -- yes ers are sad
bug- -- hey there riley...good to see ya
keuka -- Bug, let them keep testing and figure it out.
jennifer-s -- CPEO, complex 1, 3, 4 and 5. some kind of variant of MELAS it seems
riley04 -- hi everyone how are you all ding tonight
bug- -- they have figured it out...it's a pituitary problem that's causing the other issues
keuka -- Marie, don't give up.
marie2354 -- are u walking still
bug- -- i'm on steroids
jennifer-s -- riley are you donna K?
keuka -- Sounds like Jenn may have a good contact for you
marie2354 -- because it has not affected ur brain thought
marie2354 -- or function
keuka -- Such lovely meds they are....but necessary, Bug
keuka -- Jenn, what is CPEO
jennifer-s -- I walk fairly well. i have some brain damage from stroke like episodes but am fairly normal (no comments bug)
bug- -- i keep stopping them because of the severe side effects
jennifer-s -- chronic progressive external opthamalplegis or very droopy eyes
bug- -- lol jenn...what crazy comments do you think i might make ? hmmmm...
keuka -- Steroids are nasty for the side effects. Daughter has always hated them
marie2354 -- they say after 12yrs that she had a miss diagnosised stroke
keuka -- Thanks Jenn....I am still learniing.
bug- -- i'll die if i don't take them though...adrenal insufficiency is fatal without steroids
keuka -- Given what pcp's know of mito, that does not surprise me, Marie.
keuka -- Bug, can an enocrinologist (Sp) work with you on dosages?
bug- -- i have less than 5 percent adrenal function left
marie2354 -- she takes for meds carnitor,multi vit,and when she doesn't get it for 3days we see the failing body quikly
jennifer-s -- oh bug thats not good
marie2354 -- she take dilantan and gabitril
bug- -- we have been keuka but they don't care about the side effects...they figure it's saving my life
keuka -- That is rough, Bug.
hen -- {welcome hen}
hen -- hello
marie2354 -- is anyone taking carnitor
keuka -- Hi Hen
marie2354 -- for ur mito
jennifer-s -- hi hen
bug- -- frustrating
bug- -- hello hen
hen -- how's ev1
riley04 -- Hi hen welcome
jennifer-s -- i was on it marie but it didn't help me
hen -- ty riley
marie2354 -- she stop talking for a year all I ask was for her to say mom one day she did again
jennifer-s -- thats great
keuka -- Oh, Marie, what a long road you have had. But it is good she is talking again.
riley04 -- hen do you or a family member have mito
marie2354 -- I know that first I have god guiding me then anything else and I keep going back for these DRs know nothing
jennifer-s -- marie has she tried coq10?
hen -- no i don't have mito riley, but was dx with limb girdle muscular dystrophy 13 years ago
jennifer-s -- marie are you on the mito list on yahoo?
marie2354 -- yes fo 10years then the ins would not cover it
bug- -- welcome to the group hen
marie2354 -- no did not know of it
riley04 -- I am sorry to hear that hen
hen -- ty bug
hen -- its ok riley
hen -- i'm getting along pretty good
hen -- i also have a dtr with same dx
hen -- she's 33
jennifer-s -- marie you should sign up. go to yahoo groups and look for "Mito" and "Mitoldies". its a great help
keuka -- How is she doing, Hen
marie2354 -- I have lupusSLE and fibromyalgia and m arms and legs are giving out I keep working a just to get up
jennifer-s -- marie there is a family from the Melborne area with mito. They have good docs. maybe they can help you
marie2354 -- I will
jennifer-s -- marie have they tested you for mito?
marie2354 -- I am in south Miami
bug- -- hen that's too bad about your daughter
hen -- she's doing pretty good although she is in the hosp now
hen -- shortness of breath
marie2354 -- yes she is the only one of my kids and my son has a touch of it but he is okay
hen -- i'm in california
keuka -- Is she doing better?
hen -- sorry to hear you are having so much going on marie
bug- -- i was born in long beach hen...still have relatives in sacramento and mendocino
hen -- yes but they still haven't found out why the shortness of breath, she's been on oxygyn for 5 days
hen -- oh wow, i'm in stockton bug
hen -- not far from sac
bug- -- cool
hen -- lol
jennifer-s -- great place for racing
hen -- lol
keuka -- And you decided to go to school in MI, Bug?!!!
hen -- can u tell me about mito, and how it affects you
jennifer-s -- i have always wanted to go to the long beach grand prix
bug- -- i've lived here my whole life keuka...in cali for 7 months
jennifer-s -- bug likes the cold
marie2354 -- I have lots but not as bad as before I was making funneral arrangements in june and god wanted me to take her to glamour shots by her july birthday and for that I am greatful. this mito is so unpredicatble, nerve racking
marie2354 -- and fustrating
keuka -- Oh well, then you do not remember it much, Bug
bug- -- or 16 if you count the pregnancy...lol
bug- -- yeah right jenn...just LOVE cold weather
riley04 -- and hockey do they have a team in CA bug
marie2354 -- but there is no real drs that know so I have to keep fighting and hanging on
bug- -- i visit cali every few years
jennifer-s -- thats hard marie. how old is she?
bug- -- riley they have the la kings and the anaheim ducks
marie2354 -- 23 and fighting
jennifer-s -- the mighty ducks!!
keuka -- Hen, every one seems to have different symptoms. Depends on the person.
bug- -- jenn...they aren't that mighty...certainly no red wings !
keuka -- Marie, that is what we mothers do best,,,keeping on fighting and hanging on.
jennifer-s -- Hanna is on the phone. she says hi
marie2354 -- thats for sure but if only drs would take more interset in some rare health and not only want to write papers here in miami there are specialist over specialist and for my girl none know anything
hen -- oic keuka, any muscle weakness?
hen -- heart problems?
bug- -- marie part of the problem is not that dr's lack the interest in studying rare diseases, but they have no financial backing to do the research
keuka -- I have weakness in my legs and sometimmes my arms. Going up stairs is hard for me. And up hills. I am exercise intolerant.
bug- -- you can't do research for free and the government and pharmaceutacal companies study those diseases which affect a large population and potentially cause deficit in the national budget or drug companies can make profit off of creating new treatments
riley04 -- hi hanna
keuka -- Some people have heart problems, others digestive problems, any system that involves muscles can be hit.
hen -- oic keuka, thanks
hen -- i have muscle weakness in lower extremities
marie2354 -- I have learned by myself her illness I do not want a cure for her but yes for others but it's like the schools they buy balls and gym equipment for years but then they cry they have no equipment so the ids just run around ball dot'd cost that much to keep this illness is a illness a deadly one for those that do not know or inform themselves of it
hen -- i can still walk a little, but mostly use a power w/c
marie2354 -- if I do not walk with articules about this illness the drs. miss treat her and make mattres worse
hen -- so sorry to hear that marie
keuka -- Hen, I am new to all this and am getting ready to set appointment for open muscle biopsy after the frsit of the year.
marie2354 -- then they say oh that is good that you have it on hand I am not the Doctors
hen -- well i'm gonna say goodnight
hen -- it was so nice meeting you all, and thanks for chatting with me
hen -- take care
keuka -- One learns early on to get copies of EVERY thing for your own records.
keuka -- Nite Hen.
hen -- well i wish you well keuka on your testing
hen -- i'll try to stop by again sometime
marie2354 -- nite Hen
hen -- 'nite all
hen -- {goodbye hen}
bug- -- absolutely keuka
keuka -- Jenn, email me a time that is good for you and Hannah and I will be there.
keuka -- Son just came home so am going to go say hello. He will be leaving tomorrow to go back home. nite all
riley04 -- nite hen
bug- -- marie it's great that she has a mom who cares so much
keuka -- {goodbye keuka}
marie2354 -- does any one have a g-tube to know how she feels sometimes really I have to put her off because I do not know what to say or do
jennifer-s -- i keep freezing
bug- -- i have a g-j mic-key tube marie
marie2354 -- I waited many years to put it in the drs thought I was crazy but I was watching her day and nite
bug- -- i keep my winter hat on in the house jenn...it helps
marie2354 -- until I could not help her anymore and was afraid of Pn
marie2354 -- she complains when I give her the milk that she is hurting
marie2354 -- or nusise
jennifer-s -- {welcome jennifer-s}
marie2354 -- am I giving to much I do not force it
jennifer-s -- i meant the computer is freezing lol
bug- -- marie it might be that you're giving it too quickly or it's too cold and causes spasms in her stomach
bug- -- lol..disregard jenn...i don't think my approach would work very well
marie2354 -- miracle mine is not frezzing
marie2354 -- oh
bug- -- marie it can also be caused by a blockage in the tube or if the tube is moving up out of place...are you flushing with water frequently to make sure there aren't any blockages ?
marie2354 -- well not the quick but the cold I take it from the box should I warm the milk
marie2354 -- I warm the water as I give it
riley04 -- I just wanted to say before the chat ends that I hope everyone has a great week and a happy and healthly new year
marie2354 -- yes I flush a lot til she tells me no more
bug- -- marie the formula i use is room temperature...anything you put in the tube should be room temp...not warmer...not colder
marie2354 -- u to Riley nite
bug- -- definately listen to her...the tube is in a VERY sensitive area and i frequently get pain...she's telling you the truth so make sure you let the doc know if it persists
marie2354 -- the tube pushing in and I pull it out some and it helps
bug- -- marie do you "vent" the tube ?
marie2354 -- well it is room tem
bug- -- that sounds like gas building up and you need to vent it out
bug- -- i have to vent my tube a few times a day
bug- -- they recommend it before feedings
marie2354 -- I did tell the dr but he ignors me and he is the best GI I have found thru this whole mess I am afraid to get him upset to a point for her has even changed since he met my daug
bug- -- jenn are you with us ?
marie2354 -- the nurses even say he has gotten softer since
marie2354 -- I put the tube in and let the air out
marie2354 -- it that right
bug- -- yep
bug- -- she might need it several times per day...you shouldn't have to move the tube at all...if it's pulling tight then that's a sign it needs venting
marie2354 -- she has a hard time moving bowels every 9/10 days and I give her lax everyday that dr gave me
bug- -- the more the tube moves back and forth, the more likely she will get sores around the area
marie2354 -- the tube goes in
bug- -- you can develop "granulation tissue" which is like a growth around the tube and becomes very inflammed and can bleed
marie2354 -- and when I am going to give her the milk it has a lot of air
bug- -- i've already had this a few times and they burn it off ( cauderize it ) with silver nitrate
marie2354 -- she has that but dr said to leave it alone
bug- -- for me granulation tissue becomes unbearably painful...i was reduced to tears
marie2354 -- he does not want to touch it he says
bug- -- it's extremely easy to remove but likely to come back after a while....it's because of the tube movement
bug- -- is this her first tube ? how long has it been in ?
marie2354 -- it just itches a lot and I am afraid she is going to pull it out like shehas 4x before
marie2354 -- since aug04
bug- -- itching can be infection
bug- -- they should give her a mic-key tube...it's low profile and greatly reduces the chance of movement
marie2354 -- is the milk giving her constipation it's so hard sometimes I have to dig it out and I give her lots of warm water and meds
bug- -- since they don't put much fiber in the formula's, you need to add it or give her laxatives...i take them regularly
marie2354 -- I think he wants to take it out but I donot think she will have that tube out because she can't eat everyday by mouth
marie2354 -- it it not infected it looks clean and not red
bug- -- they need to be replaced every 6 months or so due to wear