Guest guest Posted January 4, 1980 Report Share Posted January 4, 1980 , Who do you see for your GI doctor. I am in Indiana as well. Struggling with the thought of surgery. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 1980 Report Share Posted January 5, 1980 , I am 34. I was born with this. I have been to IU med center many many times. Good doctors there. I am unsure who my cousin that lives here also sees. I will try to find out. good luck Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 1980 Report Share Posted January 5, 1980 , I am here talk away. If I am able to help you I will be glad to do so. Where in Indiana are you from. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 Hello ( name ) , welcome to the group and we hope you will find it helpful and supportive. Where do you live? We are an international group and often helpful links can be made with people near to you. Chris (Plymouth UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 I am a new comer in the last few days if anyone knows of any surgeons in the Indiana area please let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 Carol, I went to a local surgeon due to being on Medicaid and had my myotomy surgery. It seems that the part he cut relaxed out to much due to my sphincter muscle at my stomach not working properly. He did do the stomach wrap too and it looks like it came undone. I now have a pocket that my food goes into and it isn't strong enough to push it into my stomach due to the muscle. I also have developed a new restriction just above the pocket and now it acts like a pump and pushes my food back up my throat and i regurgitate in my sleep and wake up choking. I go monday to see one of the local digestive doctors because the surgeon doesn't specialize in this problem. Says that usually doesn't happen with the surgery. I suspect that he will be sending me to Indy to a specialist up there. So until then i don't know what is going on. I just want them to fix it so i don't die in my sleep one night. I have actually woke up and had stuff coming out of my nose...before i wake up. So its getting kind of scary. I am suppose to sleep sitting up now and not to eat or drink 1 1/2 hours before i go to bed, not to take anything that could make me sleepy..cause i might now wake up in time..and would aspirate on it. Its a bitch sorry to say. I'm only 31 with three girls to take care of..i don't have the time to keep going through this stuff. I just wish i knew of a doctor up there so that i could get referred to him or her when i ask to be. Hope you find a good doctor...if i get any names i will let you know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2002 Report Share Posted June 30, 2002 Hi, I had two manometry's done in the last few months. The first time they worked for an hour trying to get the tube done. They had me come back in a month and put me to sleep and the doctor put the tube in and then they woke me up to do the test. It wasn't too bad. Just glad it is over. I plan to have the surgery done. Never had any other things done as I know they are a short term fix. I have an appointment on July 2nd. to see a doctor in Atlanta. I will keep everyone posted on the results. This is a wonderful place to be with a rare disease. We can help each other. Hang in there. Bev. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2002 Report Share Posted June 30, 2002 Hang in there. I have had this for years. The first time I woke up choking was over twenty years ago. I couldn't breathe at all. I drank water and I was just fine then. Keep water with you at all times near your bed. Keep elevated and take your Previcid or whatever you take for reflux, before you go to bed, not during the day. It will still help you during the day, but you will not have the reflux as much. I started with this problem at age 40 and I am now 65. I made it this far and you will too. Get the best doctor for this. It is a rare disease. Therefore, many don't know about it. I live in SC and have been told to go to Emory Hospital for my surgery as they do more of them there instead of Greenville. My email address is tedbevboo@.... You can write me anytime if I can help. My name is Bev. Good luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Carol. I need help and quick..this doctor down here is scaring the shit out of me let me know i'm trying to get a second opinon.... If you are on i will tell you my story Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Hello Darlene, My name is Amy and I would like to welsome you to the land of Still's. I am 35 and have only had this disease a short while. It was cought quickly and high doses of pred followed by methatrexate, while lowering the pred has put it mostly into remission. Hope it stays there. Glad you found us, it does seem like a family after a while, everyone is nice and considerate. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Dear Darlene, Welcome to the group. I have had Stills or Systemic JRA since age 12. I am 35 now. My first symptom was also the rash. I was pretty lucky though most of my other symptoms hit me like a ton of bricks. When my mother finally took me to a Doc. a general Doc. at that, said he wasn't positive but he thought I had JRA. I was admitted in to the hospital and a Rheum. was called in and luckily without too much to do I was diagnosed. Welcome to the group. I can definitely relate to what your saying. Unfortunately so many people stereotype this disease and others that are similar as an old persons disease and that the person with the disease has a few mild aches and pains. I am hoping this stereotype is slowly going away. Again Welcome, jatw@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 Welcom Darlene, I am 46 and had JRA Stills since 3yo. Welcome to the group. ette wrote:Dear Darlene, Welcome to the group. I have had Stills or Systemic JRA since age 12. I am 35 now. My first symptom was also the rash. I was pretty lucky though most of my other symptoms hit me like a ton of bricks. When my mother finally took me to a Doc. a general Doc. at that, said he wasn't positive but he thought I had JRA. I was admitted in to the hospital and a Rheum. was called in and luckily without too much to do I was diagnosed. Welcome to the group. I can definitely relate to what your saying. Unfortunately so many people stereotype this disease and others that are similar as an old persons disease and that the person with the disease has a few mild aches and pains. I am hoping this stereotype is slowly going away. Again Welcome, jatw@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2003 Report Share Posted February 13, 2003 Hi Nancee and Curtis and all the new members! You will find a lot of information from this wonderful group. Please don't hesitate to ask any questions you might have. I have had Achalasia for 12 years. My daughter, Robyn, is 11 and I first started all the symptoms when I was pregnant. I gained 12 pounds and she was 6 lbs 1 oz. She is healthy and doing great. I was very sick after she was born and pregnancy did not work after that. The food I miss the most is corn-on-the-cob with tons of butter! I think everyone must have a favourite food. Also ice cream. When I try to eat ice-cream, it takes so long to go down that it turns to foam. Throwing up foam is not fun! Anyway, I was just going to say the best tasting high calorie meal for me is french vanilla meal replacement from Herbalife. I tastes delicious and it's very fattening. I have it in my milk three times a day. It's not thick at all, very filling, lots of calories. Healthy people are supposed to have this instead of a meal but I need the vitamins and calories. It's expensive but the 576 gram container lasts a long time. I order it directly from Herbalife and it tastes great. Don't order vitamins though, they are huge ( can't swallow them ) and I made that mistake once when I was looking for something to give me more energy. By the way ( To Mara ) It's -39 degrees Celsius in Thunder Bay!!! I put my poor dog out for 15 minutes tonight and she was holding her right leg up in pain. My van was plugged in for a few hours so I could go for groceries. My gas peddle was frozen and my van would not move. Our lowest gas price right now is 87.3 cents per litre. Is it worse in Ottawa? They say it will go as high as $1.00 per litre! How much does this have to do with the possible war? ( Off topic, Sorry ) in Thunder Bay, Ontario, Canada ( For all you terrific new members hopefully living in a warmer climate) a new member Hi everyone. I am a brand new member and this is my first time talking to people with achalasia. I came across this group quite by accident. I was looking on line for some high calorie meals. I'm looking to put weight on but not up my already high cholesterol. I have been living with A since 1984. My first symptoms were a gurggling sound in my throat. Then came the hard time swallowing, then that awful pain. I thought for sure I was experiencing a heart attack at the age of 29. Just after I began investigating with different Dr's i became pregnant. All investigative procedures came to a halt for 9 months. My pregnancy was terrible to say the least. I only gained 8 lbs. My son was born 31/2 weeks early and gained a wonderful 71/2 lbs. I ended up in the hospital 2 days after I brought him home. I was malnurished and had pnuemonia. I then went through weeks of barium swallows,endoscopys,tubes down my throat to check pressure ponts, drugs, blind studies and finally a balloon delitation. Which hurt like hell and did very little for my condition. I have not ahad a thing done since. I have learned to just deal. I know what I can and cannot eat. I stay away from carbonated beverages, pulpy fruits, ice cream and puddings. If i eat slowly and have a big glass of water (NO ICE) to chug-a-lug. I can make it . I do get embarassed because I find I have to belch after each swig of liquid and there is no sipping I have to gulp. My family is so supportive. My kids have never seen me any other way. My husband is wonderful and takes good care of me when I get the pains. We call them my "attacks" I never leave the house without a large bottle of water because I never know when they are going to happen. They come on suddenly and very strong. I try not to panic. some last 2 minutes some last for hours. My dr. did try verapamil (Dilator for heart patients) all it did was bring down my already low blood pressure. So anyway I'm a 49 year old women who does remember when i lived to eat now i eat to live. Please write. I've never had the chance to talk to people who have been there. Most people think they know what your going thru but lets face it until you have walked in our shoes, right? Nancee 32000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2003 Report Share Posted February 13, 2003 Welcome Welcome from NJ a new member Hi everyone. I am a brand new member and this is my first time talking to people with achalasia. I came across this group quite by accident. I was looking on line for some high calorie meals. I'm looking to put weight on but not up my already high cholesterol. I have been living with A since 1984. My first symptoms were a gurggling sound in my throat. Then came the hard time swallowing, then that awful pain. I thought for sure I was experiencing a heart attack at the age of 29. Just after I began investigating with different Dr's i became pregnant. All investigative procedures came to a halt for 9 months. My pregnancy was terrible to say the least. I only gained 8 lbs. My son was born 31/2 weeks early and gained a wonderful 71/2 lbs. I ended up in the hospital 2 days after I brought him home. I was malnurished and had pnuemonia. I then went through weeks of barium swallows,endoscopys,tubes down my throat to check pressure ponts, drugs, blind studies and finally a balloon delitation. Which hurt like hell and did very little for my condition. I have not ahad a thing done since. I have learned to just deal. I know what I can and cannot eat. I stay away from carbonated beverages, pulpy fruits, ice cream and puddings. If i eat slowly and have a big glass of water (NO ICE) to chug-a-lug. I can make it . I do get embarassed because I find I have to belch after each swig of liquid and there is no sipping I have to gulp. My family is so supportive. My kids have never seen me any other way. My husband is wonderful and takes good care of me when I get the pains. We call them my "attacks" I never leave the house without a large bottle of water because I never know when they are going to happen. They come on suddenly and very strong. I try not to panic. some last 2 minutes some last for hours. My dr. did try verapamil (Dilator for heart patients) all it did was bring down my already low blood pressure. So anyway I'm a 49 year old women who does remember when i lived to eat now i eat to live. Please write. I've never had the chance to talk to people who have been there. Most people think they know what your going thru but lets face it until you have walked in our shoes, right? Nancee 32000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 Hi and welcome to the group, although we all hate to hear of more kids with this disease. If you hang around here, you will meet many people whose kids have JRA and you will not feel so alone. At least, after all these years (nearly nine!) I don't. I consider the folks here friends, as they really understand what it is like to have a child with this disease in its many forms. I hope you, and all the new members, find some comfort and info here. As to how they deal with it as adults, if you check out the posts you can see many of us have older kids and we have adults here who have had it since childhood. I will say this much, the treatments of today are much better than in the past and I believe are always improving, which gives the younger ones a greater chance of less active disease as they get older. As you said, each case is different. Some kids will outgrow it, some will not. As for my son, we were told he will have to deal with it to some degree the rest of his life. Your child is young and you are being pro active in her treatment which is huge. Keep fighting for her, at her age she has only her parents to advocate for her best interests. Good for you for finding a dr who can address her symptoms and give you a plan you are comfortable with. One suggestion, please make sure she has her eyes checked for uveitis. This is inflammation in the eye, a form of arthritis that unfortunately can strike. They say pauci girls are most susceptible, but as this list proves that is not always the case. The eye dr will examine the eye and do a slit lamp test. Tell the eye dr of her diagnosis. Most kids must be checked every 3 to 6 months at first, and if clear for a period of time then you lessen the visits. My son went 3 months the first year after diagnosis, then 6 months for 5 years, and now once a year, as he has always been clear. If you have already done all of this, sorry! I just like to make sure new members are aware of this possibility. Welcome again, and please feel free to ask questions, vent, post good news, whatever. Someone is sure to listen! Michele ( 22, spondy) ________________________________ From: [mailto: ] On Behalf Of kim_j_williams@... Sent: Tuesday, May 26, 2009 3:18 AM Subject: A new member I have a daughter with JRA, ANA positive. She is five tomorrow and was diagnosed when she was two. It took eight months to get a diagnosis. It presented with a toe that would not heal, it still looks the same. She currently has been diagnosed with pauciarticular extended. She has seven joints involved, two toes, two knees, an ankle, an elbow and her jaw. She has been taking methotrexate injections for the last nine months and it seems to be helping. I was wondering if anybody else had this type of arthritis? From what I understand the more joints involved the less likelihood of her growing out of this. I don't know anyone else that has a child with JRA. My daughter seems to do really well with injections and multiple doctor visits. She has been an angel. I did well with it till the last year, the more joints involved the more stressed out I have become. We did switch doctors and I'm really happy with this one. He actually gave me a prognosis which I never received from the other doctor. He also has a plan of action. I just really worry about my daughters future and if there is anything that I should try to make it better for her. I guess I wonder how children with JRA deal with it as adults. Is it something that comes and goes? Or is it something that they will always have to deal with? Obviously, it depends on the individual case. I wonder what experiences other people have had with this situation and if there is anything else I can do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Hi Bee I am a new member of your group and would like to participate in discussions. I am on Candida diet for my recurrent yeast infections. Love your recipes. I just oredered Ghee last night too. gilliath Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2011 Report Share Posted February 9, 2011 > > Hi Bee > I am a new member of your group and would like to participate in discussions. I > am on Candida diet for my recurrent yeast infections. Love your recipes. I just > oredered Ghee last night too. > +++Hi gilliath, Welcome to our group. This group is not like other discussion groups where members can become confused by so many different ideas, methods and treatments. That is because this group is based upon Bee's Candida Program. After you have done the " required reading " emailed to you when you joined, you will be able to participate in discussions and ask appropriate questions. Ensure you read two important articles so you know what you need to do and why: How to Successfully Overcome Candida: http://www.healingnaturallybybee.com/articles/intro2.php Curing Candida, How to Get Started: http://www.healingnaturallybybee.com/articles/intro1.php For encouragement and inspiration see these wonderful Success Stories by members of this group: http://www.healingnaturallybybee.com/success/index.php All the best, Bee Quote Link to comment Share on other sites More sharing options...
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