Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 I have also been reading, and Dr. says, that achalasia is widely believed to be autoimmune in origin. This does not surprise me as I already have one autoimmune disease and they often run in pairs. Also, when I was still on prednisone for the other autoimmune disease (autoimmune hepatitis)I was not bothered with any swallowing problems whatsoever. Is it illogical, do you think, to assume that if the pred helped one disease, it was also helping the other even though I did not know it, because they were of similar origins? Ellston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 Dear Thanks for what you've said but it will probably "stir things up " a bit !! I also have other autoimmune disorders and have asked if others in this group have any. Several responded saying that yes they do have other conditions which are autoimmne disorders. That it not saying achalasia is an autoimmune disorder in any way shape or form, as yet nobody knows. It just seems that some people have more than the one condition and it seems sevrla people do have some problem with their autoimune system . That is also not saying that if you have achalasia that you'll get other things. My consultant and General Practitioner both have siad they are not surprised I was diagnosed with achalasia as they have read info. re links between the two but not conclusive evidence to say that it is an autoimmune disorder. I find my days on prednisolone are hard to manage as the side effects hit me hard .. I will monitor next time any differences in how I can swallow as to date I can't say I have noticed anything that great !! I hope this doesn't create too mcuh of a stir again as last time I only asked a question as to whether anybody else had an autoimmune condition. I'm only replying to you as perhaps you wern't part of the group when all this was discussed a short time ago? Look back on the web pages and see the "discussion" ! Thanks for sharing and I hope your conditions are well controlled . (UK) autoimmune? I have also been reading, and Dr. says, that achalasia is widely believed to be autoimmune in origin. This does not surprise me as I already have one autoimmune disease and they often run in pairs. Also, when I was still on prednisone for the other autoimmune disease(autoimmune hepatitis)I was not bothered with any swallowing problems whatsoever. Is it illogical, do you think, to assume that if the pred helped one disease, it was also helping the other even though I did not know it, because they were of similar origins? Ellston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 Hello Jean: Thank you for the information! The little device I use is called a Silva Stimulator. I place it on my neck for 5 minutes every day and I feel better all day. You may e-mail alexg@... is you want to order one, he told me he would try and get some for my achalasia friends online if it could help any of us. Also, I found that singing helps me to feel better (I joined my church choir). Or, I talked to a musician who told me to try playing a kazoo to stimulate vibrations in my neck. I haven't tried that yet. The best thing of course was the Heller's myotomy. I got good medical care and got it right away at UCLA. It would be nice to know what caused the achalasia, but I'm concentrating more on maintaining good health overall, especially relaxation. Warmest regards, Elena Wagner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 > This is the first time I've heard that achalasia is an autoimmune disease. > All the doctors I've talked to say they just don't know what causes it - > period. Where did you read this info? Would you be able to post it or do a > link to it? I just found a little device that stimulates muscles that seems > to really help me when I put it on my neck. I'll link up the site if anyone > is interested. Thank you! Thanks for your input. I too, have no idea what the causes are. Some of my info came from Dr. who said she could not confirm or deny the autoimmune connection. The other came from an article from the Gale Medical Encyclopedia on the web when I was searching for info on achlasia, there were some others too, but I cannot remember where I found them. Perhaps in the same place. I merely typed in the word and that was the first article--did not bother to get an address. That, too, said this was only an hypothesis. So, perhaps it's coincidence that the treatment for AIH also helped, actually eliminated, the lazy esophagus while I was on it. I have found that massage helps me enormously, so that may be similar to the device you speak of? Research on autoimmune disease is gradually growing in this country as the gov. begins to fund it more generously--perhaps, down the line, it may shed more light on this. E. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 > Dear > Thanks for what you've said but it will probably " stir things up " a bit !! > I also have other autoimmune disorders and have asked if others in this group have any. Several responded saying that yes they do have other conditions which are autoimmne disorders. That it not saying achalasia is an autoimmune disorder in any way shape or form, as yet nobody knows. It just seems that some people have more than the one condition and it seems sevrla people do have some problem with their autoimune system . That is also not saying that if you have achalasia that you'll get other things. My consultant and General Practitioner both have siad they are not surprised I was diagnosed with achalasia as they have read info. re links between the two but not conclusive evidence to say that it is an autoimmune disorder. > I find my days on prednisolone are hard to manage as the side effects hit me hard .. I will monitor next time any differences in how I can swallow as to date I can't say I have noticed anything that great !! > I hope this doesn't create too mcuh of a stir again as last time I only asked a question as to whether anybody else had an autoimmune condition. I'm only replying to you as perhaps you wern't part of the group when all this was discussed a short time ago? Look back on the web pages and see the " discussion " ! > > Thanks for sharing and I hope your conditions are well controlled . > > (UK) > Perhaps coincidence that symptoms went while on prednisone, or maybe the anti-inflammatory properties of pred were what eliminated the condition temporarily--will never know I guess, even if I have to go back on the pred down the line. I still take immunosupressives, and symptoms of " lazy esophagus " are certainly present, so that could mean it is not the immune system. It's a puzzle!!! Did not know it created such a controversy earlier--sorry if it does same now. What autoimmune disease do you have, if I'm not being too pushy to ask? On the AIH web site there are many women from the UK who have varying degrees of AIH--one of them, quite severe. E. > > > autoimmune? > > > I have also been reading, and Dr. says, that achalasia is widely > believed to be autoimmune in origin. This does not surprise me as I > already have one autoimmune disease and they often run in pairs. > Also, when I was still on prednisone for the other autoimmune disease > (autoimmune hepatitis)I was not bothered with any swallowing problems > whatsoever. Is it illogical, do you think, to assume that if the pred > helped one disease, it was also helping the other even though I did > not know it, because they were of similar origins? Ellston > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 Dear have only recently joined this group, what other autoimmune conditions have people described? CLAIRE (UK) -----Original Message----- From: [mailto:cmjfriary@...] Sent: 28 October 2001 09:59 achalasia Subject: Re: autoimmune? Dear Thanks for what you've said but it will probably " stir things up " a bit !! I also have other autoimmune disorders and have asked if others in this group have any. Several responded saying that yes they do have other conditions which are autoimmne disorders. That it not saying achalasia is an autoimmune disorder in any way shape or form, as yet nobody knows. It just seems that some people have more than the one condition and it seems sevrla people do have some problem with their autoimune system . That is also not saying that if you have achalasia that you'll get other things. My consultant and General Practitioner both have siad they are not surprised I was diagnosed with achalasia as they have read info. re links between the two but not conclusive evidence to say that it is an autoimmune disorder. I find my days on prednisolone are hard to manage as the side effects hit me hard .. I will monitor next time any differences in how I can swallow as to date I can't say I have noticed anything that great !! I hope this doesn't create too mcuh of a stir again as last time I only asked a question as to whether anybody else had an autoimmune condition. I'm only replying to you as perhaps you wern't part of the group when all this was discussed a short time ago? Look back on the web pages and see the " discussion " ! Thanks for sharing and I hope your conditions are well controlled . (UK) autoimmune? I have also been reading, and Dr. says, that achalasia is widely believed to be autoimmune in origin. This does not surprise me as I already have one autoimmune disease and they often run in pairs. Also, when I was still on prednisone for the other autoimmune disease (autoimmune hepatitis)I was not bothered with any swallowing problems whatsoever. Is it illogical, do you think, to assume that if the pred helped one disease, it was also helping the other even though I did not know it, because they were of similar origins? Ellston Your use of is subject to the Terms of Service. Your use of is subject to the Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Hi Elena- in what way does the Silva Stimulator make you feel better? Do you find that it helps with swallowing or other Achalasia symptoms? Bill In NJ Re: Re: autoimmune? Hello Jean: Thank you for the information! The little device I use is called a Silva Stimulator. I place it on my neck for 5 minutes every day and I feel better all day. You may e-mail alexg@... is you want to order one, he told me he would try and get some for my achalasia friends online if it could help any of us. Also, I found that singing helps me to feel better (I joined my church choir). Or, I talked to a musician who told me to try playing a kazoo to stimulate vibrations in my neck. I haven't tried that yet. The best thing of course was the Heller's myotomy. I got good medical care and got it right away at UCLA. It would be nice to know what caused the achalasia, but I'm concentrating more on maintaining good health overall, especially relaxation. Warmest regards, Elena Wagner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Yes, I am interested in just a basic description of autoimmune diseases...I seem to be having trouble healing from dental problems, can't get rid of infection, does this somehow relate? --- <claire.smith@...> wrote: > Dear have only recently joined this group, > what other autoimmune > conditions have people described? > > CLAIRE (UK) > > Re: autoimmune? > > Dear > Thanks for what you've said but it will probably > " stir things up " a bit > !! > I also have other autoimmune disorders and have > asked if others in this > group have any. Several responded saying that yes > they do have other > conditions which are autoimmne disorders. That it > not saying achalasia > is an autoimmune disorder in any way shape or form, > as yet nobody knows. > It just seems that some people have more than the > one condition and it > seems sevrla people do have some problem with their > autoimune system . > That is also not saying that if you have achalasia > that you'll get other > things. My consultant and General Practitioner both > have siad they are > not surprised I was diagnosed with achalasia as they > have read info. re > links between the two but not conclusive evidence to > say that it is an > autoimmune disorder. > I find my days on prednisolone are hard to manage as > the side effects > hit me hard .. I will monitor next time any > differences in how I can > swallow as to date I can't say I have noticed > anything that great !! > I hope this doesn't create too mcuh of a stir again > as last time I only > asked a question as to whether anybody else had an > autoimmune condition. > I'm only replying to you as perhaps you wern't part > of the group when > all this was discussed a short time ago? Look back > on the web pages and > see the " discussion " ! > > Thanks for sharing and I hope your conditions are > well controlled . > > (UK) > > > > autoimmune? > > I have also been reading, and Dr. says, that > achalasia is widely > believed to be autoimmune in origin. This does not > surprise me as I > already have one autoimmune disease and they often > run in pairs. > Also, when I was still on prednisone for the other > autoimmune disease > (autoimmune hepatitis)I was not bothered with any > swallowing problems > whatsoever. Is it illogical, do you think, to assume > that if the pred > helped one disease, it was also helping the other > even though I did > not know it, because they were of similar origins? > Ellston > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Yes, I am interested in just a basic description of autoimmune diseases...I seem to be having trouble healing from dental problems, can't get rid of infection, does this somehow relate? --- <claire.smith@...> wrote: > Dear have only recently joined this group, > what other autoimmune > conditions have people described? > > CLAIRE (UK) > > Re: autoimmune? > > Dear > Thanks for what you've said but it will probably > " stir things up " a bit > !! > I also have other autoimmune disorders and have > asked if others in this > group have any. Several responded saying that yes > they do have other > conditions which are autoimmne disorders. That it > not saying achalasia > is an autoimmune disorder in any way shape or form, > as yet nobody knows. > It just seems that some people have more than the > one condition and it > seems sevrla people do have some problem with their > autoimune system . > That is also not saying that if you have achalasia > that you'll get other > things. My consultant and General Practitioner both > have siad they are > not surprised I was diagnosed with achalasia as they > have read info. re > links between the two but not conclusive evidence to > say that it is an > autoimmune disorder. > I find my days on prednisolone are hard to manage as > the side effects > hit me hard .. I will monitor next time any > differences in how I can > swallow as to date I can't say I have noticed > anything that great !! > I hope this doesn't create too mcuh of a stir again > as last time I only > asked a question as to whether anybody else had an > autoimmune condition. > I'm only replying to you as perhaps you wern't part > of the group when > all this was discussed a short time ago? Look back > on the web pages and > see the " discussion " ! > > Thanks for sharing and I hope your conditions are > well controlled . > > (UK) > > > > autoimmune? > > I have also been reading, and Dr. says, that > achalasia is widely > believed to be autoimmune in origin. This does not > surprise me as I > already have one autoimmune disease and they often > run in pairs. > Also, when I was still on prednisone for the other > autoimmune disease > (autoimmune hepatitis)I was not bothered with any > swallowing problems > whatsoever. Is it illogical, do you think, to assume > that if the pred > helped one disease, it was also helping the other > even though I did > not know it, because they were of similar origins? > Ellston > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 DEar --There are are at least 80 known autoimmune diseases and many others that no one is sure about. For a good description of many of them go to any good search engine and type in AARDA(American Autoimmune Related Diseases Assoc.) and you get all the information you need. Jean autoimmune?> > I have also been reading, and Dr. says, that> achalasia is widely > believed to be autoimmune in origin. This does not> surprise me as I > already have one autoimmune disease and they often> run in pairs. > Also, when I was still on prednisone for the other> autoimmune disease> (autoimmune hepatitis)I was not bothered with any> swallowing problems > whatsoever. Is it illogical, do you think, to assume> that if the pred > helped one disease, it was also helping the other> even though I did > not know it, because they were of similar origins? > Ellston> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 Thanks for the info jean! --- Ellston <jeanfran@...> wrote: > DEar --There are are at least 80 known > autoimmune diseases and many others that no one is > sure about. For a good description of many of them > go to any good search engine and type in > AARDA(American Autoimmune Related Diseases Assoc.) > and you get all the information you need. Jean > autoimmune? > > > > I have also been reading, and Dr. says, that > > achalasia is widely > > believed to be autoimmune in origin. This does > not > > surprise me as I > > already have one autoimmune disease and they > often > > run in pairs. > > Also, when I was still on prednisone for the > other > > autoimmune disease > > (autoimmune hepatitis)I was not bothered with > any > > swallowing problems > > whatsoever. Is it illogical, do you think, to > assume > > that if the pred > > helped one disease, it was also helping the > other > > even though I did > > not know it, because they were of similar > origins? > > Ellston > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 I believe there is possibly a link between Achalasia and other autoimmune diseases. My mom has Scleroderma and Raynaud's and my brother has Raynaud's as well.(both autoimmune diseases) I believe that others in this group have family members who have related diseases. Is that right? I read on the AARDA's web site, www.aarda.org, (The web site refered us to, to find out info about autoimmune disease) that Immune disorders are likely genetic. Here is the section from there web site: " Autoimmune diseases also seem to have a genetic component, but, mysteriously, they can cluster in families as different illnesses. For example, a mother may have lupus erythematosus; her daughter, diabetes; her grandmother, rheumatoid arthritis. Research is shedding light on genetic as well as hormonal and environmental risk factors that contribute to the causes of these diseases. " I don't know what this all means? I was just courious between the link(if there is one) to my disease Achalasia and my Mom's Sceroderma. I try to take everything I read with a grain of salt, Try not to jump to conclusions. But I think the more info we get the better off we are, when we talk to our doctor we can be informed ask him questions that let him/her know we arn't passive and are taking a active role in our health care. But Knowledge is power and the more we can find out about the condition we have the better off we are. But I try to get more info just for my own well being. Allthough I don't feel I'm always in control of this condtion, I can inform myself to gain a little control. This group is one way. Sometime I just sit back and read the emails but other time I work up the courage to respond and share my point of view. ~Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 I remember asking my doctor 3 years ago if there was any connection between what my dad has and my achalasia and he said it was too general a connection, and to leave it at no one knows for sure and there's no use in blaming it on the family genes. I'm just repeating what he told me. I'm just wondering if there were any really recent studies done on possible connections and how we could access such information. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 So far nobody in my family have any diagnosed or suspected autoimmune diseases. Achalasia is the only major health problem I've had so I don't have any (unless achalasia is one, of course). It does sound as though there could be some relation maybe. I find it hard to believe that nerves in the esophagus just start dying for no reason. I think the reason is maybe some kind of autoimmune reaction, perhaps kicked off by some virus or an inherited autoimmune issue. But wouldn't they be able to tell that achalasia is caused by the immune system? I read through all the autoimmune descriptions on that website and someone figured out those conditions were immune system problems. Not sure how they determine that though. How do they treat autoimmune disorders? I'm guessing they have to suppress the immune system. Wonder if any trials have been done with immune system drugs and achalasia. > I believe there is possibly a link between Achalasia and other autoimmune > diseases. My mom has Scleroderma and Raynaud's and my brother has Raynaud's > as well.(both autoimmune diseases) I believe that others in this group have > family members who have related diseases. Is that right? > I read on the AARDA's web site, www.aarda.org, (The web site Jean refered us > to, to find out info about autoimmune disease) that Immune disorders are likely > genetic. Here is the section from there web site: > > " Autoimmune diseases also seem to have a genetic component, but, > mysteriously, they can cluster in families as different illnesses. For example, a > mother may have lupus erythematosus; her daughter, diabetes; her > grandmother, rheumatoid arthritis. Research is shedding light on genetic as well > as hormonal and environmental risk factors that contribute to the causes of > these diseases. " > > I don't know what this all means? I was just courious between the link(if there is > one) to my disease Achalasia and my Mom's Sceroderma. I try to take > everything I read with a grain of salt, Try not to jump to conclusions. But I think > the more info we get the better off we are, when we talk to our doctor we can > be informed ask him questions that let him/her know we arn't passive and are > taking a active role in our health care. But Knowledge is power and the more we > can find out about the condition we have the better off we are. But I try to get > more info just for my own well being. Allthough I don't feel I'm always in control > of this condtion, I can inform myself to gain a little control. This group is one > way. Sometime I just sit back and read the emails but other time I work up the > courage to respond and share my point of view. ~Michele Quote Link to comment Share on other sites More sharing options...
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