Guest guest Posted August 23, 2003 Report Share Posted August 23, 2003 Welcome Shari, I hope you find this list to be supportive and filled with the information you need. I have an article on the urinary tract and EDS but am not sure it's what you are looking for. I'll send it along. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2003 Report Share Posted August 23, 2003 Hi Shari! Cheri here...(who wrote you)...glad you decided to come on baord as you can see ...friendly 'faces' and helpful info ( if and whenever possible). btw, what state are you in?...there may be some EDS'ers closer than you think... <smile> Cheri in , B.C. Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2003 Report Share Posted August 23, 2003 Hi Cheri I am in New Jersey and I haven't gotten much help from EDNF as of yet. Any infor would be great Thanks Shari > > Hi Shari! > Cheri here...(who wrote you)...glad you decided to come on baord > as you can see ...friendly 'faces' and helpful info ( if and whenever > possible). btw, what state are you in?...there may be some EDS'ers closer > than you think... <smile> > Cheri > in , B.C. Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2003 Report Share Posted August 23, 2003 HI : I am in the United States in NJ. The doctor that diagnosed my daughter was Dr. Paige Kaplan at the Children's Hospital of Philadelphia. She was great. Brina had her first UTI at three months of age her pediatrician suggested a UCVG, which is a catherderized x-ray. It showed that when she urinated some of the urine backs up into her kidneys. There are different grades of severity, she has grade 1 and grade 3 reflux. Her urologist is hoping she will outgrow it. But her genetisit wants to see her med reports to see if her ureters are loose like her joints. She take septra on a daily basis to keep her from getting a urinary tract infection, because with reflux it could damage her kidneys. Hope I answered your question, you can email me at slkuzel@... if you have more questions. Thanks Shari -- In ceda , " Ions " <Ions1@a...> wrote: > Hi Shari, I was diagnosed this year with Eds. I have a 14 month old > daughter but I got told she was to young to be diagnosed. I was told she > would have to be at least 5 years old,so I was wondering if you would mind > telling me the name of the Doctor who diagnosed your daughter & at which > hospital? > Can you also explain to me what kidney reflux is & is it conected to Eds? > My daughter has just had a water infection, it took 3 lots of antibiotics > to clear it. The doctors originally told me she didn't have a water > infection, but about 8 weeks later I got a phonecall to say she did & could > me put another sample in to be tested. I think it could of been cleared up > quicker if she had antibiotics sooner. In a couple of months she has to > have a scan of her kidneys to see if any damage has been caused by the > water infection. Thats why I was wondering if kidney problems are conected > to Eds? > Does anyone other than your daughter have Eds in your family? > > > (from Newcastle,UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 Welcome !!Glad you found us.Sounds like you have a great success story.Thank you for sharing.Keep up the great work! Kim F RNY 6/23/06 298/229/135 > > I just wanted to introduce myself since I am so happy that I found > this site. I had my surgery one year ago this past Sept. 16th. I have > lost 150 lbs. so far and recently had multiple hernia surgery (6 > total). I decided to have the gastric bypass surgery because I had a > one year old, at the time, who i could no longer play with. I couldn't > get on the floor with him: I wasn't able to keep up with him, etc., > etc., etc. (we've all been there or somewhere like it!) I dedicate my > wanting to survive to my love for him (even though I will never tell > him 'cause I wouldn't want to put that pressure on him)....But, I am > now a size 12/14 (depending on the cut of the " buttoning " ---non > elastic pants) and I cannot be healthier. I still have a goal to loose > another 45 pounds to make myself happy; however, if I don't get there > it's not the end of the world. I can walk tons of miles: my son and I > walk to the grocery store (him in his stroller) which is 5 miles away. > We, as a family, bicycle every Sunday morning after church for 10 > miles or so. We hike, we play, we walk everywhere: I even slid down a > slide at the park the other day and didn't break it (and, no one gave > my funny looks). I need to buy winter clothing and I walked into the > Gap today and no one came up to me and rudely said " Can I help you? " : > I was ignored! Yippe! So, enough of my rambling: I look forward to > meeting everyone and helping out in any way I can. Happy loosing everyone. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 , Welcome to the group......I love to hear how people did it.....So please share all that you want to, I think allot of us like to hear success stories. 150 pounds is just awesome! Great job, I hope you get to your goal..... Mike T Introduction >I just wanted to introduce myself since I am so happy that I found > this site. I had my surgery one year ago this past Sept. 16th. I have > lost 150 lbs. so far and recently had multiple hernia surgery (6 > total). I decided to have the gastric bypass surgery because I had a > one year old, at the time, who i could no longer play with. I couldn't > get on the floor with him: I wasn't able to keep up with him, etc., > etc., etc. (we've all been there or somewhere like it!) I dedicate my > wanting to survive to my love for him (even though I will never tell > him 'cause I wouldn't want to put that pressure on him)....But, I am > now a size 12/14 (depending on the cut of the " buttoning " ---non > elastic pants) and I cannot be healthier. I still have a goal to loose > another 45 pounds to make myself happy; however, if I don't get there > it's not the end of the world. I can walk tons of miles: my son and I > walk to the grocery store (him in his stroller) which is 5 miles away. > We, as a family, bicycle every Sunday morning after church for 10 > miles or so. We hike, we play, we walk everywhere: I even slid down a > slide at the park the other day and didn't break it (and, no one gave > my funny looks). I need to buy winter clothing and I walked into the > Gap today and no one came up to me and rudely said " Can I help you? " : > I was ignored! Yippe! So, enough of my rambling: I look forward to > meeting everyone and helping out in any way I can. Happy loosing everyone. > > > > > > > > > We are a very active support group. > If the email becomes overwhelming, > please change your setting to NO EMAIL! > Please contact Group Creator > Robyn@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Hi everyone. My name is and I am from New Mexico. I am 30 years old and recently diagnosed with fibromyalgia. My diagnosis only followed severe back pain that I had an MRI and x-ray for which showed everything was " normal " . Before now, I never knew much about FMS. However, I found a site that had a great list and explanation of symptoms. After looking that over, I have had most of the symptoms for at least 2 years and some a little longer. I have tons of questions, but before I start asking I will read through some of the previous messages and possibly find some answers. Is there anyone from New Mexico or southern Colorado in the group? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 > > Hi my name is Tina and I am 42yrs. old with five children (only four > still live at home). I have Fibromyalgia, insomnia, RA, RLS, compressed > fractures in my back, cronic pain, Migrains and now all of a sudden my > skin is driving me crazy (very itchy, just start a few days ago). > Anyhow... I am hoping to find more information about what I have and > why SS wont approve me. Does anyone else have everything that I have? I > am finding everyone I meet that has Fibro has something else but not > the same as I do. > Thank You for letting me join and I want to wish everyone a " happy new > year " > > Thanks, > Tina > Hi Tina, my name is LeAnne I am 44yrs old with 3 children and just got the last bird out of the nest!I was diagnosed with F.m. back in October 2005, i also have alot of the same signs and symptoms you have, I just found out back in October that My spine is full of bulging disc that, i have to go back in Feb to see the surgeon to schedule me for surgery, to fix c7 because it is putting pressure on a nerve and causing nerve damage, the Dr. sent me home for three months on pain management, thinking it was going to heal it self, and personally I'm getting tired of the pain!I also deal with migraines along with rsl and the dry itchy skin! so welcome to the group you will find alot of hepful people on this group! Leanne Quote Link to comment Share on other sites More sharing options...
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