Guest guest Posted May 4, 2003 Report Share Posted May 4, 2003 I have the same thing sometimes!!! I wondered if it is from a medication. What did your rheumy say about this? Maybe I should mention it to mine. So many things I just take for granted and think " one more weird thing with my poor body. " I've also been having trouble with my lungs for a while, and was just put on the Advair inhaler - even though I'm not really wheezing. The steroid seems to help me breathe better. Love and hugs, Carol Re: [ ] Oh drat!!! This has peaked my interest. Just a quick question... when you first started having trouble swallowing, how would you describe it? I told my rheumy this week there were times I felt like my body " forgot " how to swallow. I have these " spells " about three times a week. I'll get something in my mouth and then can't swallow, like I can't remember which reflexes control swallowing. It can be very scary. Is this similar to what you have experienced? Janet Elf wrote: > Well... just my LUCK! Now I find THIS about MYOSITIS! Dag-nab-it! If > it is true, and I do have it like the doctor says. This would explain > my LUNG problems, and also the " chocking/swallowing " problems. Just > today, I started to drink something, my " swallowing " went beserk > again, > and I inhaled the liquid, almost (REALLY) choaked to death! I am still > > gasping, and that was hours ago! My husband was ready to bring me to > the ER!~ This happens so OFTEN. When I sleep, I wake up choaking and > have > > to get up. It only started doing this about 9 months ago. What do > ya'll think??? > Elf > Anyway... I found this on the MYOSITIS also: > MYOSITIS: > myositis, a little-known disorder that causes muscle inflammation and > weakness throughout the human body and can affect breathing, > digestion, > and function of the heart muscle. > According to , scientists have long suspected that certain > genetic > and environmental risk factors can work together to lead to disease. > Myositis--a chronic, incurable, potentially fatal disease that > afflicts > at least 30,000 children and adults in the United States--may be > triggered by infections or exposure to certain drugs or sunlight in > people who are genetically predisposed. The group's initial goal will > be > to understand the disorder's possible genetic and environmental risk > factors, which they plan to accomplish through several stages of > studies. > Myositis, like many autoimmune disorders, is often underdiagnosed for > two chief reasons. First, patients exhibit nonspecific symptoms common > > to many diseases and disorders (such as muscle or joint pain and > fatigue), or there is no clinical manifestation of the illness until > long into the disease phase. Second, the disorders themselves are > rare, and physicians don't diagnose disorders they know little or > nothing about. Armed with more knowledge of the disease, physicians > will eventually stand better equipped to diagnose and treat it. But > because > > myositis is one of the rarest autoimmune disorders, says, one > initial challenge will be finding enough patients--100 or so for each > study. For that reason, the research group will collaborate with > doctors in other locations. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2003 Report Share Posted May 4, 2003 She didn't really respond to my question. She seemed to be more concerned with the RA affecting the vascular system. I also have been wheezing some, especially at night. Haven't mentioned this of yet. Carol wrote: > I have the same thing sometimes!!! I wondered if it is from a > medication. What did your rheumy say about this? Maybe I should > mention it to mine. So many things I just take for granted and think > " one more weird thing with my poor body. " I've also been having > trouble > with my lungs for a while, and was just put on the Advair inhaler - > even > though I'm not really wheezing. The steroid seems to help me breathe > better. > > Love and hugs, > Carol > > Re: [ ] Oh drat!!! > > > This has peaked my interest. Just a quick question... when you first > started having trouble swallowing, how would you describe it? > > I told my rheumy this week there were times I felt like my body > " forgot " > how to swallow. I have these " spells " about three times a week. I'll > > get something in my mouth and then can't swallow, like I can't > remember > which reflexes control swallowing. It can be very scary. Is this > similar to what you have experienced? > > Janet > > Elf wrote: > > > Well... just my LUCK! Now I find THIS about MYOSITIS! Dag-nab-it! > If > > it is true, and I do have it like the doctor says. This would > explain > > my LUNG problems, and also the " chocking/swallowing " problems. Just > > today, I started to drink something, my " swallowing " went beserk > > again, > > and I inhaled the liquid, almost (REALLY) choaked to death! I am > still > > > > gasping, and that was hours ago! My husband was ready to bring me to > > > the ER!~ This happens so OFTEN. When I sleep, I wake up choaking > and > > have > > > > to get up. It only started doing this about 9 months ago. What do > > ya'll think??? > > Elf > > Anyway... I found this on the MYOSITIS also: > > MYOSITIS: > > myositis, a little-known disorder that causes muscle inflammation > and > > weakness throughout the human body and can affect breathing, > > digestion, > > and function of the heart muscle. > > According to , scientists have long suspected that certain > > genetic > > and environmental risk factors can work together to lead to disease. > > > Myositis--a chronic, incurable, potentially fatal disease that > > afflicts > > at least 30,000 children and adults in the United States--may be > > triggered by infections or exposure to certain drugs or sunlight in > > people who are genetically predisposed. The group's initial goal > will > > be > > to understand the disorder's possible genetic and environmental risk > > > factors, which they plan to accomplish through several stages of > > studies. > > Myositis, like many autoimmune disorders, is often underdiagnosed > for > > two chief reasons. First, patients exhibit nonspecific symptoms > common > > > > to many diseases and disorders (such as muscle or joint pain and > > fatigue), or there is no clinical manifestation of the illness until > > > long into the disease phase. Second, the disorders themselves are > > rare, and physicians don't diagnose disorders they know little or > > nothing about. Armed with more knowledge of the disease, physicians > > will eventually stand better equipped to diagnose and treat it. But > > because > > > > myositis is one of the rarest autoimmune disorders, says, one > > > initial challenge will be finding enough patients--100 or so for > each > > study. For that reason, the research group will collaborate with > > doctors in other locations. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Hello At this point in time there is no way to stop this disease or prevent it from happening.  This is a progressive disease also.  Talk with your doctors and find out the best way to mannage this disease for you. Also ask as many questions here and with your doctors. Be informed, that is the best way to figure out what is best or you. in Georgia.  <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia </FONT><IMG src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " > ________________________________ From: pgupta2382 <pgupta2382@...> achalasia Sent: Fri, January 22, 2010 10:55:56 AM Subject: difficulty swallowing  Hi i have difficulty swallowing since past 2 months. I had gone for barium swallow and endoscopy. It did not show achalasia.But can this be the early stage or can this become achalasia. Are there ways to prevent the disease in early stages. Plz help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 Thanks for your reply. It describes my symptoms to a " T " . It convinced me to not wait any longer.  Dan  From: keanenutrition <maureenkeane@...> Subject: Re: difficulty swallowing achalasia Date: Saturday, January 23, 2010, 1:00 AM  Six years ago I was like you. Had a barium swallow and endoscopy because of problems swallowing. The doctor said it was just esophageal spasms and there was nothing to worry about. Five years later my esophagus was so dilated I was close to end stage disease and losing it. So keep a watch on things and don't become me. Endoscopy will not find achalasia. Have you had an esophageal manometry yet? This test measures peristalsis in your esophagus. It is a test best done at a major center. Properly done it can help diagnose achalasia. The problem with a barium swallow is that it exposes you to radiation so doctors do not like to order them frequently. Mine were 5 years apart and my esophagus went from normal to grossly dilated in that time. If I had it to do again, I would go to the University's Swallowing Disorders Clinic for evaluation by experts. Find the closest medical school and see if they have a similar clinic in your area. I think this is worth traveling to see a doctor with a lot of achalasia experience. The disorder is rare and a scalpel in a less than expert's hand can cause life long problems. It is also better to have surgery done early when it is obvious you are losing peristalsis. Don't be one of those who put it off as long as they can. My surgeon said there was a very slight chance of reversing the disease in those who had surgery very early. That is the only thing research has shown can stop it from progressing and even then it is rare it happens. My symptoms were extremely bad heart burn, the sensation of swallowing glass shards, and saliva (a foam) coming back up. I would wake up coughing (from food particles getting into my lungs) and I had to eventually sleep sitting up. What's really gross is that I could hack (cough not vomit) food up. Sometimes I would would cough up yesterday's lunch, still recognizable. I thought something was wrong with my stomach that I was not digesting food when the problem was that the food was sitting in my esophagus fermenting and burning the esophageal walls. Good luck! > > Hi i have difficulty swallowing since past 2 months. I had gone for > barium swallow and endoscopy. It did not show achalasia.But can this be > the early stage or can this become achalasia. Are there ways to prevent > the disease in early stages. Plz help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 Hi, My symptoms came on pretty fast and hard. Within months after first noticing swallowing issues, I had reached the point where it was nearly impossible to get anything down. I suspect I had some symptoms earlier (severe hiccups while eating, for example), but I don't honestly recall. From the time of the onset of severe achalasia, around October 2007, until I had a myotomy (Heller - Dor wrap) in May 2008, I lost 25% of my body weight, and it was getting worse. I found this group in the process of researching possible causes, and have been a regular reader, if not participant, ever since. My personal conclusion, after reading hundreds of posts, and doing my own research in what medical sites have information on achalasia, was that the best way for me to achieve a reasonable quality of life, with as few potential complications as possible, was to have a myotomy. I was lucky - my GI was familiar with the condition, and diagnosed me quickly. My advice has remained the same - find out what's going on and act on it. There are other conditions (worse than achalasia, IMHO) that can cause these symptoms. Find a GI who understands this and get a proper diagnosis. The folks who seem to have the most problems are those who waited - again, just my own observation. I'm not without occasional minor issues, but am living a virtually normal life. I believe that's because I found good doctors and dealt with it as soon as I could. You're in the right place - there are tons of people here, with most of the scenarios of achalasia, and related conditions covered. I feel fortunate to have found this group, and to have been able to take advantage of its collective wisdom/experiences. I read every post, and occasionally respond to posts like yours. Keep asking questions until you are comfortable that you understand your condition and your options. Just my advice, of course. Lee in Atlanta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 First you should make sure that you are going to a doctor with experience concerning achalasia. It is a rare problem and a lot of doctors don't really know it. Second, if it is achalasia, it can't be stopped. However you can do things like eating slow, drink a lot of water while you eat, avoid dry food like bread without anything or dry meat. This is because everytime something stucks in the esophagus, it widens the esophagus, which is irreversible, and it can lead to inflammations in the e., which are also bad on the long run. Third even if it is not achalasia, you should try to find out what it is. There are other illnesses with similar symptoms, who should be treated, too. Best, Lars. > > Hi i have difficulty swallowing since past 2 months. I had gone for > barium swallow and endoscopy. It did not show achalasia.But can this be > the early stage or can this become achalasia. Are there ways to prevent > the disease in early stages. Plz help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Lee in Atlanta: I live in Atlanta too. Who is your GI & who did the surgery? Thanks, Joanie > > Hi, > > My symptoms came on pretty fast and hard. Within months after first noticing swallowing issues, I had reached the point where it was nearly impossible to get anything down. I suspect I had some symptoms earlier (severe hiccups while eating, for example), but I don't honestly recall. From the time of the onset of severe achalasia, around October 2007, until I had a myotomy (Heller - Dor wrap) in May 2008, I lost 25% of my body weight, and it was getting worse. > > I found this group in the process of researching possible causes, and have been a regular reader, if not participant, ever since. My personal conclusion, after reading hundreds of posts, and doing my own research in what medical sites have information on achalasia, was that the best way for me to achieve a reasonable quality of life, with as few potential complications as possible, was to have a myotomy. I was lucky - my GI was familiar with the condition, and diagnosed me quickly. > > My advice has remained the same - find out what's going on and act on it. There are other conditions (worse than achalasia, IMHO) that can cause these symptoms. Find a GI who understands this and get a proper diagnosis. The folks who seem to have the most problems are those who waited - again, just my own observation. I'm not without occasional minor issues, but am living a virtually normal life. I believe that's because I found good doctors and dealt with it as soon as I could. > > You're in the right place - there are tons of people here, with most of the scenarios of achalasia, and related conditions covered. I feel fortunate to have found this group, and to have been able to take advantage of its collective wisdom/experiences. I read every post, and occasionally respond to posts like yours. Keep asking questions until you are comfortable that you understand your condition and your options. Just my advice, of course. > > Lee in Atlanta > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Hi Joanie, My GI is Dr Brad Lord - he's up in Gwinnett County. Dr. performed my myotomy. He's Chief of Thoracic Surgery at Emory. I'm sure there are others who are qualified in the area, but I can definitely recommend both of them. Lee > > > > Hi, > > > > My symptoms came on pretty fast and hard. Within months after first noticing swallowing issues, I had reached the point where it was nearly impossible to get anything down. I suspect I had some symptoms earlier (severe hiccups while eating, for example), but I don't honestly recall. From the time of the onset of severe achalasia, around October 2007, until I had a myotomy (Heller - Dor wrap) in May 2008, I lost 25% of my body weight, and it was getting worse. > > > > I found this group in the process of researching possible causes, and have been a regular reader, if not participant, ever since. My personal conclusion, after reading hundreds of posts, and doing my own research in what medical sites have information on achalasia, was that the best way for me to achieve a reasonable quality of life, with as few potential complications as possible, was to have a myotomy. I was lucky - my GI was familiar with the condition, and diagnosed me quickly. > > > > My advice has remained the same - find out what's going on and act on it. There are other conditions (worse than achalasia, IMHO) that can cause these symptoms. Find a GI who understands this and get a proper diagnosis. The folks who seem to have the most problems are those who waited - again, just my own observation. I'm not without occasional minor issues, but am living a virtually normal life. I believe that's because I found good doctors and dealt with it as soon as I could. > > > > You're in the right place - there are tons of people here, with most of the scenarios of achalasia, and related conditions covered. I feel fortunate to have found this group, and to have been able to take advantage of its collective wisdom/experiences. I read every post, and occasionally respond to posts like yours. Keep asking questions until you are comfortable that you understand your condition and your options. Just my advice, of course. > > > > Lee in Atlanta > > > Quote Link to comment Share on other sites More sharing options...
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