Guest guest Posted March 22, 2003 Report Share Posted March 22, 2003 Gwen, Welcome to you and your family. You are in the right spot for finding suggestions AND comfort! <smile> The cyclical behavior problems you mentioned are interesting only in that they mirror the cyclical problems that many of us see in other areas as well (in my family it's either cyclical vomiting or cyclical diarrhea). Maybe that is yet another mtio connection. Anyway, sounds like Austen is blessed with a very caring mommy who nkows how to find what is best in the way of medical care and education. Gald you are here. ruth mom to Mitch (will be 8 in 2 weeks) and Lexi ( my Belle of the Beauty and the Beast ball, turns 5 on Monday) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2003 Report Share Posted April 24, 2003 Welcome, gospelmagic! Ask away. This is a pretty knowlegeable group of people. Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2003 Report Share Posted April 24, 2003 Dear Don & , first and foremost, WELCOME! I'm glad you finally found your way here. I know you will find much comfort and support here. This group has truly been my thread to sanity on more than one occasion! Take a few minutes and introduce your darling son, if you'd like. It's good to see you on and posting. ruth mom to Mitch (8) and Lexi (5), both mito affected Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 First off try to get a fresh muscle biopsy done, like at Cleveland Ohio, this biopsy is the best, well at least they can check more clearly which mito it is. Prepare yourself not everyone that has a biopsy gets result's. A lot of these mito's are very hard to dx. Go to the www.UMDF.com web site and do a lot of research ahead of time, their is power in knowledge, but it can also be overwhelming to. I would like to write more but I need to get my son to aquatics therapy, I'll check in later, you've found the right place to ask questions. These parent's on here know a lot trust them, we've all been their where you are now. Patty Kraynik Josh----- Mito Myopathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 Marit, I am sorry that you are in the boat, but there is alot of info out there.Unfortunately it is very complicated. The best source is www.UMDF.org. The United Mitochondrial Disease Foundation. There is great info. In particular check out from the library (I believe) past issues of the newsletter. There is a lot of explanations etc. in there. I hope that this helps and I'm sure others will point you to further websites with more info. It's a great and knowledgable group (more knowledgable than a lot of doc's), so any questions please don't hesitate to ask. Welcome aboard! Dawn Myers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 Hello my name is shannnon and i have a little gir name she has lieghs dix. What i can tell you about her dis. is that it is fatal in the first yr. but every one is differant from others some people last longer than others it really depends on what the person has and how rapidly it moves on them we found out in Jan 2003 she is now 6 months old so she is in her 5 month of this dix and she is trying to hangin there but just keep it in mind that EVERY BODY IS DIFFERANT!!! i dont want to scare you. go to the library in the mito. home page and put in your child disease and press go it should find that piticaler one you are looking for your friend shannon and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2003 Report Share Posted May 14, 2003 MY had one done and it showed nothing nothing at all so they cut my angel for nothing and she has lieghs dis. and is on her death bed at this point in time i hope it may help some one but if you dont have to put them through it then dont. s showed up on a mri that there is swellin in the deep part of her brain and all of her symptoms showed them that she had it all the best luck to you and god bless you shannon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 Hi Amy, Our family is also new to Mito too. My daughter was formally diagnosed with Mitochondrial Myopathy last month. also has a Carnitine deficiency. We are treating that with Carnitor. Also, is receiving Aquatics therapy at her school. She seems so much more tired, appetite poor, and she has lost so much weight. Since her gait has been so greatly affected, she spends most of her time getting around in a wheelchair. But she is walking a little bit. Did your son have a difficult time recovering from the biopsy? They did the muscle biopsy on the back of 's left calf. She has a horrible scar from it. And it hurt her for a month afterwards. And it took two months to the day, to get the results. 's biopsy was sent frozen to Toronto. We still have DNA test results out. It takes so long. Just trying to find out what has been making so ill, has taken such a long, frustrating time. But at last we have an answer. Thanks for listening. Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2004 Report Share Posted May 22, 2004 , > Take a robe because it gets cold in the hospital sometimes ( the kind that > opens/buttons in the front.) > take thongs or slippers because they make you walk Now I know why you suggest a warm robe. But do I realy have to wear a thong? Can't I just wear my boxers? <silly grin> Ed Kemper & Delores edkemper@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 hehehe, people used to always call them thongs, lol.... I never knew what they were talking about at first, lol... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 Hahhh ha hahahha! yes!!! you can wear boxers, but bring 2 because you will need one for each foot! :-))))))))))) I guess I should have said flip-flops. At 03:22 PM 5/22/04, you wrote: >, > > > Take a robe because it gets cold in the hospital sometimes ( the kind that > > opens/buttons in the front.) > > > take thongs or slippers because they make you walk > >Now I know why you suggest a warm robe. But do I realy have to wear a >thong? Can't I just wear my boxers? <silly grin> > >Ed Kemper & Delores >edkemper@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Priscila, I think it's " iffy " whether you meet the criteria or not. You have to have a BMI of 40 or greater and/or be 100lbs over your ideal weight. Once you get a recommendation for a surgeon in your area, they should be able to tell you when you call the office whether you meet the criteria for that surgeon. Having other obesity related health problems counts in your favor when figuring eligibility too. Do let us know how you make out! > So, what do you all think? Think I can find a doctor to do the > surgery? Think I'm not a candidate? What? > p Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 I'm sure there are good docs in KC, but I'm in St. Louis and can tell you that Dr. Eagon is the best! He's with -Jewish, . Good luck! Kelley skunks4me wrote: > Hi all! I am new to this group but have been reading posts for the last > several days. My name is Priscilla, I'm 52 yrs. old, and I live in > Pleasant Hill, MO. That's just south and a bit east of Kansas City. Is > there anyone here who lives in KC and if so, can you recommend any doctors > here? > > I am no different than anyone else on this list. I too have had weight > problems all my life and, of course, have tried and failed every diet ever > invented, gaining back lost weight, plus. > > I have been contemplating this surgery for almost three years. Last year I > was living in Florida and had gone to an info meeting, was getting things > set up, when my life changed drastically. Now I'm in another state and > looking to start over again and am still looking for a doctor that is > willing to do the surgery on me. I say willing because I am not all that > terribly heavy right now. I have lost about 30+ lbs. in the last nine > months by eating low carb, but, I can't keep doing this diet as it's not > normal and I'm finding it harder each day to continue. I know as soon as I > stop I will start the regaining process and I am here to tell you that I am > totally dieted out! > > I am now around 215 lbs., 5'5 " tall. I have major ankles problems, due to > weight and being extremely flat footed, sleep apnea, my hips and knees hurt > when I'm in bed, ( I already have two memory foam mattress on top my > regular mattress), I tried and failed on every diet for the last 40 years, > my self esteem jumps up and down like a yo yo along with my moods and I > suffer chronic depression. All of this, not to mention the problem finding > clothes that fit and have some sort of style, not getting the job cause I'm > too big, even though I'm better qualified than the thin person they end up > hiring, being overlooked in a store or stared at from someone with disgust > on their face, etc. I know you all know exactly what I'm talking about. > > I am terrified to gain back the weight I've suffered to long to take off > but I know I can't keep up like this and I also know I will never reach a > decent goal. I get so depressed that I will not go out in public for weeks > at a time and so discouraged that I my depression gets worse because I keep > waking up in the mornings. > > I'm not looking to be a size 6. I just want to be able to walk without > pain, sleep and feel rested, lay down and not hurt, be visible to others, > and feel good about myself. I want to be able to take the grand kids to > the pool when they ask me to go with them. I want to wake up in the > morning and be excited to be alive and ready to jump into the day. I want > to feel confident, secure about my body, and like a hole person and not two, > > So, what do you all think? Think I can find a doctor to do the > surgery? Think I'm not a candidate? What? > p > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Priscilla, I think with your weight and height you will be borderline, but with your comorbidities you might get in. I went on asbs.org and calculated your BMI and you are at 35.7. You have to have a 40 or greater without comorbidities or a 35 or greater with comorbidities. So if you have diabetes, high blood pressure and/or any other issues you might be able to get approved. I think those are AMA standards but I could be wrong. You can also go to obesityhelp.com and I think look up doctors in your area and call them and ask them what the requirements are. Hope this helps and welcome to the group. Dora Awaiting approval in TN New to Group Hi all! I am new to this group but have been reading posts for the last several days. My name is Priscilla, I'm 52 yrs. old, and I live in Pleasant Hill, MO. That's just south and a bit east of Kansas City. Is there anyone here who lives in KC and if so, can you recommend any doctors here? I am no different than anyone else on this list. I too have had weight problems all my life and, of course, have tried and failed every diet ever invented, gaining back lost weight, plus. I have been contemplating this surgery for almost three years. Last year I was living in Florida and had gone to an info meeting, was getting things set up, when my life changed drastically. Now I'm in another state and looking to start over again and am still looking for a doctor that is willing to do the surgery on me. I say willing because I am not all that terribly heavy right now. I have lost about 30+ lbs. in the last nine months by eating low carb, but, I can't keep doing this diet as it's not normal and I'm finding it harder each day to continue. I know as soon as I stop I will start the regaining process and I am here to tell you that I am totally dieted out! I am now around 215 lbs., 5'5 " tall. I have major ankles problems, due to weight and being extremely flat footed, sleep apnea, my hips and knees hurt when I'm in bed, ( I already have two memory foam mattress on top my regular mattress), I tried and failed on every diet for the last 40 years, my self esteem jumps up and down like a yo yo along with my moods and I suffer chronic depression. All of this, not to mention the problem finding clothes that fit and have some sort of style, not getting the job cause I'm too big, even though I'm better qualified than the thin person they end up hiring, being overlooked in a store or stared at from someone with disgust on their face, etc. I know you all know exactly what I'm talking about. I am terrified to gain back the weight I've suffered to long to take off but I know I can't keep up like this and I also know I will never reach a decent goal. I get so depressed that I will not go out in public for weeks at a time and so discouraged that I my depression gets worse because I keep waking up in the mornings. I'm not looking to be a size 6. I just want to be able to walk without pain, sleep and feel rested, lay down and not hurt, be visible to others, and feel good about myself. I want to be able to take the grand kids to the pool when they ask me to go with them. I want to wake up in the morning and be excited to be alive and ready to jump into the day. I want to feel confident, secure about my body, and like a hole person and not two, So, what do you all think? Think I can find a doctor to do the surgery? Think I'm not a candidate? What? p Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 This is only accurate in certain circumstances and varies based on insurance companies and physicians. For instance BCBS-GA considers only " medical necessity " there are no comorbidities required, only 100+ lbs. and the BMI that would naturally be high at that weight. You will want to check with your insurance company and physician to determine if you are a viable candidate for the surgery. Lap RNY April 9, 2004 348/286/140 (begin/current/goal) www.carrieburns.net > 5'5 " and 215 lbs ? you need to be 2oo lbs overweight and have 2 > exceptable comobities ( diabeted - acid reflux - sleep apnea- ) higher > than 42 i believe bmi . there are some insurance co that are doing it > if you are only 8o lbs but that is very few and i don't know who they > are.i'm 5'4 " 240 lbs and i almost didn't get the surgery until i told > them i was not diabetic. my surery date aug 18th lap > > bye shirley of fontana so cal > > skunks4me wrote: > Hi all! I am new to this group but have been reading posts for the > last > several days. My name is Priscilla, I'm 52 yrs. old, and I live in > Pleasant Hill, MO. That's just south and a bit east of Kansas City. > Is > there anyone here who lives in KC and if so, can you recommend any > doctors > here? > > I am no different than anyone else on this list. I too have had > weight > problems all my life and, of course, have tried and failed every diet > ever > invented, gaining back lost weight, plus. > > I have been contemplating this surgery for almost three years. Last > year I > was living in Florida and had gone to an info meeting, was getting > things > set up, when my life changed drastically. Now I'm in another state > and > looking to start over again and am still looking for a doctor that is > willing to do the surgery on me. I say willing because I am not all > that > terribly heavy right now. I have lost about 30+ lbs. in the last nine > months by eating low carb, but, I can't keep doing this diet as it's > not > normal and I'm finding it harder each day to continue. I know as > soon as I > stop I will start the regaining process and I am here to tell you > that I am > totally dieted out! > > I am now around 215 lbs., 5'5 " tall. I have major ankles problems, > due to > weight and being extremely flat footed, sleep apnea, my hips and > knees hurt > when I'm in bed, ( I already have two memory foam mattress on top my > regular mattress), I tried and failed on every diet for the last 40 > years, > my self esteem jumps up and down like a yo yo along with my moods and > I > suffer chronic depression. All of this, not to mention the problem > finding > clothes that fit and have some sort of style, not getting the job > cause I'm > too big, even though I'm better qualified than the thin person they > end up > hiring, being overlooked in a store or stared at from someone with > disgust > on their face, etc. I know you all know exactly what I'm talking > about. > > I am terrified to gain back the weight I've suffered to long to take > off > but I know I can't keep up like this and I also know I will never > reach a > decent goal. I get so depressed that I will not go out in public for > weeks > at a time and so discouraged that I my depression gets worse because > I keep > waking up in the mornings. > > I'm not looking to be a size 6. I just want to be able to walk > without > pain, sleep and feel rested, lay down and not hurt, be visible to > others, > and feel good about myself. I want to be able to take the grand kids > to > the pool when they ask me to go with them. I want to wake up in the > morning and be excited to be alive and ready to jump into the day. I > want > to feel confident, secure about my body, and like a hole person and > not two, > > So, what do you all think? Think I can find a doctor to do the > surgery? Think I'm not a candidate? What? > p > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 > > > Date: 2004/07/09 Fri PM 04:33:02 GMT > To: Gastric_Bypass_Family > Subject: Re: New to Group > > HELLO ALL I AM JUST WRITING TO SAY THANK YOU ALL READING EACH EMAILS REALLY HELP OUT I AM 4 MONTHS OUT TODAY I HAVE LOST 122 AND I FEEL GREAT. BUT THE ONLY THING IS MY HUBBY THINKS I AM GOING TO GO FIND SOMEONE NEW BECASUE HE IS BIG . HOW CAN I GET HIM TO SEE THAT HE IS WRONG. CRYSTAL 402/280/135 Quote Link to comment Share on other sites More sharing options...
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