Guest guest Posted November 9, 2000 Report Share Posted November 9, 2000 Hi Carolyn, Welcome to the RP. group. A lot of your symptoms sound like RP. with a few other things thrown in. I'm Sandy and I'm from Ohio. I'm married 32 years, 5 kids and 5 grandkids. Have had Rp. for about 10 years, only DX. since May of 99. Where are you from? Do you have a Rheumatologist? I am looking forward to getting to know you better. Hugs, Sandy ----- Original Message ----- > I hope I'm doing this right, I've never done anything like this > before and this site is a little bewildering. > > I'm posting this because I think I probably have relapsing > polychondritis. I'd like to know if my story sounds familiar to any > of you and/or what you think of it. > > It started about 3 years ago with a severe ( " necrotizing staph " ) > infection of my right ear, which in retrospect I wonder if it might > have been RP. There was a lot of pain that continued after the > infection cleared. About 2-3 weeks later I had an unusual outbreak > on my outer right ear -- it seemed to follow the cartilage -- very > red, very painful. Saw my ENT who dragged me to about 5 or 6 other > ENTs, a dermatologist, an infectious disease specialist, etc, all of > whom had never seen this. " Shotgun " treated with Prednisone and > antibiotics. > > I continued to have severe pain in my ears. There were times when i > couldn't sleep more than an hour at a time before the pain would wake > me. At the same time I had a decrease in my hearing and increasing > problems with balance. The pain and discomfort spread to my other > ear, then my nose, then my palate and throat. > > I had an episode of shaking chills 2 years ago for which I was > hospitalized -- they found no infection. > > Still with continued pain in head/neck, intermittently joints (my > fingers, wrist, etc) would turn red and sore for awhile. My ears > would turn red sometimes. I got a severe rash in my hands and feet > which a dermatologist thought was due to an " id " reaction -- a skin > reaction to chronic infection in my ears. I've had a long history of > childhood ear infections and growths in the ears whic have required > many surgeries. Sometimes joints would turn red and sore. My > hearing fluctuated, my blanace fluctuated, sometimes I had trouble > with blurry vision, > > In March of this year I began getting gradually weaker for about 6-8 > weeks, eventually to the point where I had trouble walking across the > room. My balance got even worse. After about 6 weeks I had 2 weeks > of being really sick, with drenching sweats alternating with shaking > chills, blurry vision, trouble swallowing and breathing. Was > admitted for dehydration. > > Then I gradually got better for about 2 months. Meanwhile, they'd > found a thyroid mass because my neck/chest Xray (done by a > chiropractor!) showed deviation of the trachea. > > In September, I went to the Mayo Clinic to see if they could figure > out what was wrong with me. Some of the MDs her thought I was > crazy. At the Mayo Clinic they found that I had abnormalities of my > throat with swallowing and about a 70% loss of vestibular function in > my left ear. Also I had retraction of my pharyingeal flap (it's a > surgery done for cleft palate that attaches the uvula -- the thing > that hangs down the back of the palate) to the back of the throat. > They took out my left thyroid mass -benign. > > About 2 weeks ago both ears turned red again and I started having > shking chills and sweats. I had some prednisone that I'd gotten for > the severe rash I's had 2 years ago so started it and it suppressed > about 80% of the symptoms. Stopped it after 5 days and got red ears > again and really sick, I think even delirious, so started the > prednisone again. Still not doing too well but at least better than > before. > > Does this sound like anything any of you have? Any words of wisdom? > > Thank you so much! > Carolyn > > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2000 Report Share Posted November 9, 2000 Hi Sandy! I'm from Hawaii. Born and raised here. How has your RP been. What symptoms do you have? Do you have symptoms between flares? Does it interfere with your life? No, I don't have a rheumatologist although I set up an appointment with one in a couple of weeks. When I was at the Mayo Clinic, one of the ENTS told me that the only ears he'd seen like mine (they've changed a lot in the last 3 years) were on boxers, hockey players and people with RP. Everyone mentioned it but no one said I had it. But when I got home, the more I thought about it the more it seemed that's what I have. I'm having to live a really simple life these days. Some days, even getting to eat is a challenge. Is it cold in Ohio? It was in the twenties when I left Minnesota 3 or 4 weeks ago, but thankfully here in Hawaii it's nice and sunny today. Thanks for your message Carolyn Re: Hello > Hi Carolyn, > Welcome to the RP. group. > A lot of your symptoms sound like RP. with a few other things thrown in. > I'm Sandy and I'm from Ohio. I'm married 32 years, 5 kids and 5 grandkids. > Have had Rp. for > about 10 years, only DX. since May of 99. > Where are you from? Do you have a Rheumatologist? > I am looking forward to getting to know you better. > Hugs, > Sandy > > > > ----- Original Message ----- > > > I hope I'm doing this right, I've never done anything like this > > before and this site is a little bewildering. > > > > I'm posting this because I think I probably have relapsing > > polychondritis. I'd like to know if my story sounds familiar to any > > of you and/or what you think of it. > > > > It started about 3 years ago with a severe ( " necrotizing staph " ) > > infection of my right ear, which in retrospect I wonder if it might > > have been RP. There was a lot of pain that continued after the > > infection cleared. About 2-3 weeks later I had an unusual outbreak > > on my outer right ear -- it seemed to follow the cartilage -- very > > red, very painful. Saw my ENT who dragged me to about 5 or 6 other > > ENTs, a dermatologist, an infectious disease specialist, etc, all of > > whom had never seen this. " Shotgun " treated with Prednisone and > > antibiotics. > > > > I continued to have severe pain in my ears. There were times when i > > couldn't sleep more than an hour at a time before the pain would wake > > me. At the same time I had a decrease in my hearing and increasing > > problems with balance. The pain and discomfort spread to my other > > ear, then my nose, then my palate and throat. > > > > I had an episode of shaking chills 2 years ago for which I was > > hospitalized -- they found no infection. > > > > Still with continued pain in head/neck, intermittently joints (my > > fingers, wrist, etc) would turn red and sore for awhile. My ears > > would turn red sometimes. I got a severe rash in my hands and feet > > which a dermatologist thought was due to an " id " reaction -- a skin > > reaction to chronic infection in my ears. I've had a long history of > > childhood ear infections and growths in the ears whic have required > > many surgeries. Sometimes joints would turn red and sore. My > > hearing fluctuated, my blanace fluctuated, sometimes I had trouble > > with blurry vision, > > > > In March of this year I began getting gradually weaker for about 6-8 > > weeks, eventually to the point where I had trouble walking across the > > room. My balance got even worse. After about 6 weeks I had 2 weeks > > of being really sick, with drenching sweats alternating with shaking > > chills, blurry vision, trouble swallowing and breathing. Was > > admitted for dehydration. > > > > Then I gradually got better for about 2 months. Meanwhile, they'd > > found a thyroid mass because my neck/chest Xray (done by a > > chiropractor!) showed deviation of the trachea. > > > > In September, I went to the Mayo Clinic to see if they could figure > > out what was wrong with me. Some of the MDs her thought I was > > crazy. At the Mayo Clinic they found that I had abnormalities of my > > throat with swallowing and about a 70% loss of vestibular function in > > my left ear. Also I had retraction of my pharyingeal flap (it's a > > surgery done for cleft palate that attaches the uvula -- the thing > > that hangs down the back of the palate) to the back of the throat. > > They took out my left thyroid mass -benign. > > > > About 2 weeks ago both ears turned red again and I started having > > shking chills and sweats. I had some prednisone that I'd gotten for > > the severe rash I's had 2 years ago so started it and it suppressed > > about 80% of the symptoms. Stopped it after 5 days and got red ears > > again and really sick, I think even delirious, so started the > > prednisone again. Still not doing too well but at least better than > > before. > > > > Does this sound like anything any of you have? Any words of wisdom? > > > > Thank you so much! > > Carolyn > > > > > > > > > > DISCLAIMER!! > > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS > RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR > BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR > PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND > TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2000 Report Share Posted November 9, 2000 Carolyn, We are having warm weather here in Ohio. Didn't even need a coat today. Tonight we are supposed to get some bad storms. I flare all the time. I have saddlenose, ear involvement, damage to my larynx, eye socket involvement, and rib and joint pain. It has greatly affected my life. I have to use a wheelchair now when I leave the house. I am very tired most of the time. I just started seeing a new Rheumy last week. (My 4th Rheumy). He is taking a much more aggressive approach so I'm starting some new meds. I am also on 2 different antibiotics. If you have any questions just ask, this is a wonderful and loving group of people. I don't know what I would do without them. Hugs, Sandy Re: Hello > > > > Hi Carolyn, > > Welcome to the RP. group. > > A lot of your symptoms sound like RP. with a few other things thrown in. > > I'm Sandy and I'm from Ohio. I'm married 32 years, 5 kids and 5 grandkids. > > Have had Rp. for > > about 10 years, only DX. since May of 99. > > Where are you from? Do you have a Rheumatologist? > > I am looking forward to getting to know you better. > > Hugs, > > Sandy > > > > > > > > ----- Original Message ----- > > > > > I hope I'm doing this right, I've never done anything like this > > > before and this site is a little bewildering. > > > > > > I'm posting this because I think I probably have relapsing > > > polychondritis. I'd like to know if my story sounds familiar to any > > > of you and/or what you think of it. > > > > > > It started about 3 years ago with a severe ( " necrotizing staph " ) > > > infection of my right ear, which in retrospect I wonder if it might > > > have been RP. There was a lot of pain that continued after the > > > infection cleared. About 2-3 weeks later I had an unusual outbreak > > > on my outer right ear -- it seemed to follow the cartilage -- very > > > red, very painful. Saw my ENT who dragged me to about 5 or 6 other > > > ENTs, a dermatologist, an infectious disease specialist, etc, all of > > > whom had never seen this. " Shotgun " treated with Prednisone and > > > antibiotics. > > > > > > I continued to have severe pain in my ears. There were times when i > > > couldn't sleep more than an hour at a time before the pain would wake > > > me. At the same time I had a decrease in my hearing and increasing > > > problems with balance. The pain and discomfort spread to my other > > > ear, then my nose, then my palate and throat. > > > > > > I had an episode of shaking chills 2 years ago for which I was > > > hospitalized -- they found no infection. > > > > > > Still with continued pain in head/neck, intermittently joints (my > > > fingers, wrist, etc) would turn red and sore for awhile. My ears > > > would turn red sometimes. I got a severe rash in my hands and feet > > > which a dermatologist thought was due to an " id " reaction -- a skin > > > reaction to chronic infection in my ears. I've had a long history of > > > childhood ear infections and growths in the ears whic have required > > > many surgeries. Sometimes joints would turn red and sore. My > > > hearing fluctuated, my blanace fluctuated, sometimes I had trouble > > > with blurry vision, > > > > > > In March of this year I began getting gradually weaker for about 6-8 > > > weeks, eventually to the point where I had trouble walking across the > > > room. My balance got even worse. After about 6 weeks I had 2 weeks > > > of being really sick, with drenching sweats alternating with shaking > > > chills, blurry vision, trouble swallowing and breathing. Was > > > admitted for dehydration. > > > > > > Then I gradually got better for about 2 months. Meanwhile, they'd > > > found a thyroid mass because my neck/chest Xray (done by a > > > chiropractor!) showed deviation of the trachea. > > > > > > In September, I went to the Mayo Clinic to see if they could figure > > > out what was wrong with me. Some of the MDs her thought I was > > > crazy. At the Mayo Clinic they found that I had abnormalities of my > > > throat with swallowing and about a 70% loss of vestibular function in > > > my left ear. Also I had retraction of my pharyingeal flap (it's a > > > surgery done for cleft palate that attaches the uvula -- the thing > > > that hangs down the back of the palate) to the back of the throat. > > > They took out my left thyroid mass -benign. > > > > > > About 2 weeks ago both ears turned red again and I started having > > > shking chills and sweats. I had some prednisone that I'd gotten for > > > the severe rash I's had 2 years ago so started it and it suppressed > > > about 80% of the symptoms. Stopped it after 5 days and got red ears > > > again and really sick, I think even delirious, so started the > > > prednisone again. Still not doing too well but at least better than > > > before. > > > > > > Does this sound like anything any of you have? Any words of wisdom? > > > > > > Thank you so much! > > > Carolyn > > > > > > > > > > > > > > > DISCLAIMER!! > > > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS > > RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR > > BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR > > PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND > > TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > > > > > > > > > > DISCLAIMER!! > > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS > RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR > BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR > PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND > TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2000 Report Share Posted November 10, 2000 Hello and welcome to the group! Sorry to here that you are having so much pain and problems. Sorry to say but it does sound like a case of RP. I have had RP for about 6 yrs now but my Dr. only put the pieces together back in march of this year. I started with skin leisions then I started having episodes with my ears. They would fill plugged and ache very badly. My balance would be off and I was gradually loosing hearing. These would last a few days and go away. I also have severe tinnitis which is constant and is very irritating. I also started having eye problems that would come and go as well. This was diagnosed as iridocyclosis. It has caused severe vision lost. My trachea has also been effected and I use a C-PAP machine when I'm lying down in order to breathe. I've also developed severe neuropathy in my left leg so i have to use a cane and also developed diabetes and heart failure. The RP also effects my nose, back and neck. I'm pretty much always in a flare, sometimes alot worse than other times. I am currently taking prednisone, methotrexate, antibiotics, vioxx and several other medications and insulin. I know you will enjoy this group, they are a great bunch of people. We're just one big happy family! You will be in my thoughts and prayers. Sheila ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2002 Report Share Posted December 28, 2002 Welcome, Christy, First, I am glad that he has been diagnosed so early. That can make a big difference. How did they decide on mito? Can you tell us a little about him and his symptoms. This is a great group and you will feel right at home and never alone. You can learn a lot from people who understand and have been there. I never wish anyone the need for this group but am awfully glad I have found it. Best wishes, Riley -----Original Message----- Sent: Wednesday, December 25, 2002 6:11 PMTo: Mito Subject: HelloHi! My name is Christy. My son has mito. They have not narrowed it down to the specific type yet. He is 4 months old now. I am just looking for some comfort knowing that there are other parents going through this that can help and that I may be able to help. I don't really know how to but I am trying to introduce myself. ThanksChristyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2003 Report Share Posted March 19, 2003 Welcome! You are at the right place. The people here are wonderful and they are my lifeline and when i cant get online I am very lost. I have two daughters Brittney 17 with heart valve problems and low bloodsugar problems. my Mito kid is almost 13 and very affected, ill since birth but only diagnosed in 2001. I have had many problems since the age of 18, they now think I have Mito and are in the process of doing tests to confirm. has not been in school for two years now she was just not able to go and when she did I had to constantly police them to follow her IEP and because she did not lok sick they were pushing her to do things she had trouble doing which just wore her out. She has a homebound teacher that comes on Fridays for socilaization and life skills only. has greatly improved doing this and is able to do more and is not constantly regressing. We are doing field trips and arts and crafts with a local christian home school group. In fact we are meeting them today to go on a big paddle wheel boat for an hour cruise up the river. Should be great fun! She will probably sllep the rest of the day because it is suppose to be 81 out today and that is kinda warm for her, but as long as she has fun. Again welcome and I look forward to talking more with you. Horsley leehorsley@... hello H everyone, I am a mom of 3 boys, two with a diagnosed mito disorder.I do not know anyone else with a child affected by this.We have had a long road and it has been getting harder and harder with my 6 yr old. I am hoping to talk with other parents facing similar challenges and maybe get some information as well. I have been in contact with the UMDF, and have recceived a packet from them. I just feel really isolated with it sometimes. My 6 yr old has complex 1 , carnitine deficiency,GERD, is gtube fed, has an undersized stomach and malabsorbtion syndrome,microencephaly, speech delay, hearing and sight defects and epilepsy.My 3 yr old has high lactic acid when nutrtionally compromised, short stature amd muscle fatigue. He is much more mildly affected and my oldest son is not affected at all.I am also facing schoolong issues as they are concerned at being able to handle my 6 yr old's needs. His seizures have become worse in recent months and he is so medicated now that he needs to be wheelchaired.Off medication he is independently mobile. So anyone with ideas and advice would be appreciated. Thanks all!Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 Thanks for the welcome!!!I havent been able to get back online here since I posted. Wow......so you have deciede to homeschool your daughter, I wonder if that is something I will have to consider down the road. I would keep him home now if I could but I definitely need to work.What mito disorder does your daughter have? How is she treated? I find there is less support and specialists here in Canada pertaining to mitochondrial disease, as opposed to the US. You waited a long time for a diagnosis, that must have been hard.I am looking forward to talking more!!! > Welcome! > You are at the right place. The people here are wonderful and they are my lifeline and when i cant get online I am very lost. I have two daughters Brittney 17 with heart valve problems and low bloodsugar problems. my Mito kid is almost 13 and very affected, ill since birth but only diagnosed in 2001. > I have had many problems since the age of 18, they now think I have Mito and are in the process of doing tests to confirm. > has not been in school for two years now she was just not able to go and when she did I had to constantly police them to follow her IEP and because she did not lok sick they were pushing her to do things she had trouble doing which just wore her out. She has a homebound teacher that comes on Fridays for socilaization and life skills only. has greatly improved doing this and is able to do more and is not constantly regressing. We are doing field trips and arts and crafts with a local christian home school group. In fact we are meeting them today to go on a big paddle wheel boat for an hour cruise up the river. Should be great fun! She will probably sllep the rest of the day because it is suppose to be 81 out today and that is kinda warm for her, but as long as she has fun. > Again welcome and I look forward to talking more with you. > Horsley > leehorsley@m... > hello > > > H everyone, I am a mom of 3 boys, two with a diagnosed mito > disorder.I do not know anyone else with a child affected by this.We > have had a long road and it has been getting harder and harder with > my 6 yr old. I am hoping to talk with other parents facing similar > challenges and maybe get some information as well. I have been in > contact with the UMDF, and have recceived a packet from them. I just > feel really isolated with it sometimes. My 6 yr old has complex 1 , > carnitine deficiency,GERD, is gtube fed, has an undersized stomach > and malabsorbtion syndrome,microencephaly, speech delay, hearing and > sight defects and epilepsy.My 3 yr old has high lactic acid when > nutrtionally compromised, short stature amd muscle fatigue. He is > much more mildly affected and my oldest son is not affected at all.I > am also facing schoolong issues as they are concerned at being able > to handle my 6 yr old's needs. His seizures have become worse in > recent months and he is so medicated now that he needs to be > wheelchaired.Off medication he is independently mobile. So anyone > with ideas and advice would be appreciated. Thanks all! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 Hi there! is still in the school system but recieves home bound services. Her teacher comes on Friday's. We are only working on socialization and life skills no academics. just kept regressing so quickly while she was in school, she just could not do it. Plus the school would not follow the IEP and gave me fits. I filed a complaint against them that I had to take all the way to Washington. The school employees, county and state people lied, doctored documents, just anything you can think of to cover their backsides. I got to the point where I could no longer continue the never ending mess and putting through all this was just to much. She has been out of school two years no and the constant regression has slowed way down. She is able to play with her friends some now ( very little compaired to other kids) and go some places as long as she has her wheelchair. She has great fun playing hide and go seek in her powerchair! Her brain is very affected and she tires very easy, but I hear alot more laughter now days and it is music to my ears! She might play out with her friends one afternoon and have to sleep the next day or two for her body to catch up but it is worth it. has complex 1 & 3. And no one in our little town has ever heard of Mito. We travel 3 1/2 hours one way to see our Dr. We do alot of emailing because of distance. My oldest daughter Brittney began having problems with her bloodsugar bottoming out last year and was also diagnosed with a heart valve problem. I have had health problems since I was 18. Dr. Shoffner in Atlanta is currently testing my blood to confirm me having this dreadful disease. We are praying for three miracles! I need to run for now but look forward to hearing from you again soon. Feel free to email privatley if you wish. Horsley , Alabama leehorsley@... hello> > > H everyone, I am a mom of 3 boys, two with a diagnosed mito > disorder.I do not know anyone else with a child affected by this.We > have had a long road and it has been getting harder and harder with > my 6 yr old. I am hoping to talk with other parents facing similar > challenges and maybe get some information as well. I have been in > contact with the UMDF, and have recceived a packet from them. I just > feel really isolated with it sometimes. My 6 yr old has complex 1 , > carnitine deficiency,GERD, is gtube fed, has an undersized stomach > and malabsorbtion syndrome,microencephaly, speech delay, hearing and > sight defects and epilepsy.My 3 yr old has high lactic acid when > nutrtionally compromised, short stature amd muscle fatigue. He is > much more mildly affected and my oldest son is not affected at all.I > am also facing schoolong issues as they are concerned at being able > to handle my 6 yr old's needs. His seizures have become worse in > recent months and he is so medicated now that he needs to be > wheelchaired.Off medication he is independently mobile. So anyone > with ideas and advice would be appreciated. Thanks all!> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 My name is and I have joined the group today, because I will be having the surgery next month, not sure what day, but I go for my pych evaluation on June 15th and the nurse said I can have it that week or the week after so I am in dire straight to talk to people who have had the surgery. I don't have much time to get on messenger so if anyone could semail me I would greatly appreciate it. My main concern is what is the statics of success, meaning what is the death rate and the success rate. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 Hi , welcome to the group!!!! If you have any questions, please feel free to email me privately @: yorkiegal2003@... Hello My name is and I have joined the group today, because I will be having the surgery next month, not sure what day, but I go for my pych evaluation on June 15th and the nurse said I can have it that week or the week after so I am in dire straight to talk to people who have had the surgery. I don't have much time to get on messenger so if anyone could semail me I would greatly appreciate it. My main concern is what is the statics of success, meaning what is the death rate and the success rate. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 Hello , Don't worry the death rate is worse staying heavy then it is to have the surgery. You will be ok. I am almost 16mon post op and i did great , you will be just fine. If you have any Q's just e-mail me ok. Good Luck, Dayte sherri edling wrote: Hi , welcome to the group!!!! If you have any questions, please feel free to email me privately @: yorkiegal2003@... Hello My name is and I have joined the group today, because I will be having the surgery next month, not sure what day, but I go for my pych evaluation on June 15th and the nurse said I can have it that week or the week after so I am in dire straight to talk to people who have had the surgery. I don't have much time to get on messenger so if anyone could semail me I would greatly appreciate it. My main concern is what is the statics of success, meaning what is the death rate and the success rate. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 as for me, i had my lap surgery 6-23-2004, i am 312 lbs.. at first, if i had to do # 2, i would take a shower to clean myself to keep myself clean and also just to keep my incisions clean. But that was only because i was sore, i am now able to clean mysel reguraly 5 days afterward.. you just have to get through the soar ness... amy Daisy Hayward wrote: Hello I am new to the group but have been doing research on gastric bypass for years for myself. I have a date, July 30 and hope to have everything go smoothly. I am scheduled for a lap RNY and I am currently at 380 pounds, 5 foot 7 inches tall, so I am looking forward to where I might be a year from now. I am glad to find a support forum that seems so welcoming and friendly. I hope I won't be out of line but could I ask a very personal question, and if it is too personal feel free to respond in e-mail if you can or wish. And I will understand if no one feels free to respond. I just thought that in a more anonymous media like this it might be a way to ask this. I am a single woman with no family nearby or friends who can be out of work to care for me after surgery. With a lap surgery will I have many problems at home by myself. Also, (here goes) how does one take care of personal hygiene when size makes it a strain sometimes even with out surgical tenderness and such to worry about. I mean things like going to the bathroom, bathing completely and such? I apologize if this is too indelicate for this list, and hope you understand. Thank you, Celeste --------------------------------- Do you Yahoo!? New and Improved Yahoo! Mail - Send 10MB messages! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 No BM's for how long? You aren't blocked are you? Kathy Hello Hi,I am back in town until Monday, where I head for Jerusalem.I have to admit I am rather nervous travelling there, so please pray for me.Does anyone have any reason why my intestines are burning??? I mean a realburning pain.I can always be reached by e-mail, ICQ and MSNLove u all,Please visit our website at:http://ACES_Autoimmune.tripod.com Please visit our website at:http://ACES_Autoimmune.tripod.com Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
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