Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 My doctor has decided that I should see a neurologist for my achalasia and neuropathy. Funny, I’ve been thinking this all along, and now that I have the appointment, I’m a little afraid about going. I wonder if he’ll have any brilliant ideas about achalasia…or if he’ll even know what it is. :-) If anyone can think of any questions for me to ask of the neurologist, feel free to share your thoughts/ideas with me. , you are the only one I know of who is seeing a neurologist about achalasia. Do you find the neurologist to be of any help to you? Thanks, Sandi Holt- Groups Links · To visit your group on the web, go to: achalasia/ · Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 Sandi, I would ask about the use of various medications for treating the NCCPs -- anti-convulsants and anti-depressants seem to have an interesting effect, and I'd like to hear a neurologist's take on the "nerve pain" angle that's been discussed here. I'll also like to know what he thinks our NCCPs are -- spasms? wrong signals being sent by nerves in the esophagus? misinterpretation of those signals by the brain? etc. And any insight into "nerve regeneration" with regards to achalasia. If I think of anything else, I'll pass it along. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 It will be interesting to see what he says. I went to one about six years ago and he said there was no evidence to suggest that it had anything to do with neuropathy. I still wonder. F RE: Neurologists for Achalasia My doctor has decided that I should see a neurologist for my achalasia and neuropathy. Funny, I’ve been thinking this all along, and now that I have the appointment, I’m a little afraid about going. I wonder if he’ll have any brilliant ideas about achalasia…or if he’ll even know what it is. :-) If anyone can think of any questions for me to ask of the neurologist, feel free to share your thoughts/ideas with me. , you are the only one I know of who is seeing a neurologist about achalasia. Do you find the neurologist to be of any help to you? Thanks, Sandi Holt- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 Holt- wrote: >... think of any questions for me to ask of the neurologist, feel free to >share your thoughts/ideas with me. > You could ask him about biofeedback and also if there are things we should avoid for the sake of our nerves. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 In a message dated 1/23/2004 3:47:02 PM Eastern Standard Time, efitzgar@... writes: The main side affect is sleep depravation. I have wondered for sometime if anyone in this group suffers from this as well. F I have a form of insommnia which involves waking up after only a couple hours sleep every night, if that counts! Jan in Northern Kentucky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 Thank you Debbi, I’ll print this up and take it with me when I go to see him. I have an appt. on March 15th. I hear this doctor is very good and very thorough and asks a lot of questions, so I’d like to be readily prepared with questions and concerns. Sandi Holt- Re: Neurologists for Achalasia Sandi, I would ask about the use of various medications for treating the NCCPs -- anti-convulsants and anti-depressants seem to have an interesting effect, and I'd like to hear a neurologist's take on the " nerve pain " angle that's been discussed here. I'll also like to know what he thinks our NCCPs are -- spasms? wrong signals being sent by nerves in the esophagus? misinterpretation of those signals by the brain? etc. And any insight into " nerve regeneration " with regards to achalasia. If I think of anything else, I'll pass it along. Deb Groups Links · To visit your group on the web, go to: achalasia/ · Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 I agree , it will be interesting. They know a lot more about achalasia now than they did six years ago. Seeing as though achalasia is a neurodegenerative disease and people with diseases like MS, Parkinsons and scleroderma are treated by neurologists, it only makes sense to me that we should see a neurologist as well. I wonder if there are other tests other than manometry and endoscopopy tests that should be done for achalasia. I have a history of multiple sclerosis in my family, and MS is diagnosed by an MRI. MS is always in the back of my mind as one of my major concerns for myself. I have really bad leg pain and numbness and I’m hoping it’s just from having degenerative disk disease. I think I need to hear the words, “Good News, you don’t have MS” so I can just put this out of my head. Thanks for listening. Sandi Holt- Re: Neurologists for Achalasia It will be interesting to see what he says. I went to one about six years ago and he said there was no evidence to suggest that it had anything to do with neuropathy. I still wonder. F RE: Neurologists for Achalasia My doctor has decided that I should see a neurologist for my achalasia and neuropathy. Funny, I’ve been thinking this all along, and now that I have the appointment, I’m a little afraid about going. I wonder if he’ll have any brilliant ideas about achalasia…or if he’ll even know what it is. :-) If anyone can think of any questions for me to ask of the neurologist, feel free to share your thoughts/ideas with me. , you are the only one I know of who is seeing a neurologist about achalasia. Do you find the neurologist to be of any help to you? Thanks, Sandi Holt- Groups Links · To visit your group on the web, go to: achalasia/ · Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 notan, I’ve been reading the discussions between you and (from Honolulu) but I’m not really clear on the whole biofeedback concept. I’ll have do some reading about this. I’ll definitely add the things we should avoid for the sake of our nerves to my list, as well as things we can do to help our nerves. Thank you…you’re always such a great help. Sandi Holt- RE: Neurologists for Achalasia Holt- wrote: >... think of any questions for me to ask of the neurologist, feel free to >share your thoughts/ideas with me. > You could ask him about biofeedback and also if there are things we should avoid for the sake of our nerves. notan Groups Links · To visit your group on the web, go to: achalasia/ · Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 Your mentioning leg pain reminded why I went to a neurologist in the first place. I have suffered from RLS (restless leg syndrome) which sounds rather innocuous but can be devastating. It involves a tingling, creeping feeling in the legs and pain that can only be helped by moving the legs, getting up and walking. I was given a medicine for Parkinson's disease that works for some but not for me. The main side affect is sleep depravation. I have wondered for sometime if anyone in this group suffers from this as well. F RE: Neurologists for Achalasia My doctor has decided that I should see a neurologist for my achalasia and neuropathy. Funny, I’ve been thinking this all along, and now that I have the appointment, I’m a little afraid about going. I wonder if he’ll have any brilliant ideas about achalasia…or if he’ll even know what it is. :-) If anyone can think of any questions for me to ask of the neurologist, feel free to share your thoughts/ideas with me. , you are the only one I know of who is seeing a neurologist about achalasia. Do you find the neurologist to be of any help to you? Thanks, Sandi Holt- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 I know the feeling well ! Thanks for sharing this. Sometimes I just jump out of bed at night and walk around the house because I can’t stand that creeping feeling. Sandi Holt- Re: Neurologists for Achalasia Your mentioning leg pain reminded why I went to a neurologist in the first place. I have suffered from RLS (restless leg syndrome) which sounds rather innocuous but can be devastating. It involves a tingling, creeping feeling in the legs and pain that can only be helped by moving the legs, getting up and walking. I was given a medicine for Parkinson's disease that works for some but not for me. The main side affect is sleep depravation. I have wondered for sometime if anyone in this group suffers from this as well. F RE: Neurologists for Achalasia My doctor has decided that I should see a neurologist for my achalasia and neuropathy. Funny, I’ve been thinking this all along, and now that I have the appointment, I’m a little afraid about going. I wonder if he’ll have any brilliant ideas about achalasia…or if he’ll even know what it is. :-) If anyone can think of any questions for me to ask of the neurologist, feel free to share your thoughts/ideas with me. , you are the only one I know of who is seeing a neurologist about achalasia. Do you find the neurologist to be of any help to you? Thanks, Sandi Holt- Groups Links · To visit your group on the web, go to: achalasia/ · Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 Yes! I have RLS too! I called it the heebie jeebies b/c I didn't know what it was. But I have to shake my leg or walk around or try and go to sleep. It happens most when I am really tired. Diane > Your mentioning leg pain reminded why I went to a neurologist in the first place. I have suffered from RLS (restless leg syndrome) which sounds rather innocuous but can be devastating. It involves a tingling, creeping feeling in the legs and pain that can only be helped by moving the legs, getting up and walking. I was given a medicine for Parkinson's disease that works for some but not for me. The main side affect is sleep depravation. I have wondered for sometime if anyone in this group suffers from this as well. > F > > RE: Neurologists for Achalasia > > > > My doctor has decided that I should see a neurologist for my achalasia and neuropathy. Funny, I've been thinking this all along, and now that I have the appointment, I'm a little afraid about going. I wonder if he'll have any brilliant ideas about achalasia.or if he'll even know what it is. :-) > > If anyone can think of any questions for me to ask of the neurologist, feel free to share your thoughts/ideas with me. > > > > , you are the only one I know of who is seeing a neurologist about achalasia. Do you find the neurologist to be of any help to you? > > Thanks, > > Sandi > > > > Holt- > > > > > > > > > > ------------------------------------------------------------------- --------- > > > > > > > > ------------------------------------------------------------------- --------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 My sister also has RLS, and she says it’s from sugar. She has MS and the RLS is a big problem for her. If she eats/drinks anything with sugar before bedtime or going on a long drive, her legs drive her crazy. Sandi Holt- Re: Neurologists for Achalasia Yes! I have RLS too! I called it the heebie jeebies b/c I didn't know what it was. But I have to shake my leg or walk around or try and go to sleep. It happens most when I am really tired. Diane > Your mentioning leg pain reminded why I went to a neurologist in the first place. I have suffered from RLS (restless leg syndrome) which sounds rather innocuous but can be devastating. It involves a tingling, creeping feeling in the legs and pain that can only be helped by moving the legs, getting up and walking. I was given a medicine for Parkinson's disease that works for some but not for me. The main side affect is sleep depravation. I have wondered for sometime if anyone in this group suffers from this as well. > F > > RE: Neurologists for Achalasia > > > > My doctor has decided that I should see a neurologist for my achalasia and neuropathy. Funny, I've been thinking this all along, and now that I have the appointment, I'm a little afraid about going. I wonder if he'll have any brilliant ideas about achalasia.or if he'll even know what it is. :-) > > If anyone can think of any questions for me to ask of the neurologist, feel free to share your thoughts/ideas with me. > > > > , you are the only one I know of who is seeing a neurologist about achalasia. Do you find the neurologist to be of any help to you? > > Thanks, > > Sandi > > > > Holt- > > > > > > > > > > ------------------------------------------------------------------- --------- > > > > > > > > ------------------------------------------------------------------- --------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 The RLS research foundations studies indicate that it is related to an iron deficiency in the brain that unfortunately cannot be replenished by taking iron pills. There is a great deal of information about this at http://rls.org there is also a support group here in the if anyone is interested. F RE: Neurologists for Achalasia> > > > My doctor has decided that I should see a neurologist for my achalasia and neuropathy. Funny, I've been thinking this all along, and now that I have the appointment, I'm a little afraid about going. I wonder if he'll have any brilliant ideas about achalasia.or if he'll even know what it is. :-)> > If anyone can think of any questions for me to ask of the neurologist, feel free to share your thoughts/ideas with me. > > > > , you are the only one I know of who is seeing a neurologist about achalasia. Do you find the neurologist to be of any help to you? > > Thanks,> > Sandi> > > > Holt-> > > > > > > > > > ----------------------------------------------------------------------------> > > > > > > > ----------------------------------------------------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 The one thing that I've found consistently correlates to me having a spasm or trouble swallowing is a change in sleep, either too little or a lot more than usual. I'll be fascinated to hear what the neurologists have to say... (Honolulu) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 wrote: The one thing that I've found consistently correlates to me having a spasm or trouble swallowing is a change in sleep, either too little or a lot more than usual. I'll be fascinated to hear what the neurologists have to say... Aloha , Thanks so much for your response. I’ll be sure to include this in my list as well. If you have any more thoughts, please be sure to let me know. I was just reading some info about biofeedback and it sounds very interesting…thanks for bringing this up. I hope I didn’t offend you the other day with my welcome...it certainly wasn’t meant to come across that way. Well anyway, welcome again, it’s great to have you as a member of our group. ;-) Sandi in No CA Groups Links · To visit your group on the web, go to: achalasia/ · Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 Sandi, No offense at all, I just thought my dictionary translation was funny. I very interested in biofeedback as well. and Notan's references are really interesting. Aloha, RE: Neurologists for Achalasia wrote: The one thing that I've found consistently correlates to me having a spasm or trouble swallowing is a change in sleep, either too little or a lot more than usual. I'll be fascinated to hear what the neurologists have to say... Aloha , Thanks so much for your response. I’ll be sure to include this in my list as well. If you have any more thoughts, please be sure to let me know. I was just reading some info about biofeedback and it sounds very interesting…thanks for bringing this up. I hope I didn’t offend you the other day with my welcome...it certainly wasn’t meant to come across that way. Well anyway, welcome again, it’s great to have you as a member of our group. ;-) Sandi in No CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 Dr. L. wrote: >The one thing that I've found consistently correlates to me having a spasm >or trouble swallowing is a change in sleep, either too little or a lot >more than usual. I'll be fascinated to hear what the neurologists have to >say... Both can cause blood glucose levels to rise. I have noticed other things people have said that change glucose levels and people report they also change achalasia symptoms. Stress, low carb diets, and exercise all change glucose levels. These things also change other things in the blood chemistry. Even if there are real connections here, one still has to wonder why these specific nerves and why such small changes would matter. Maybe because these nerves are already damaged by other things. I find these things interesting but I don't know what they could mean. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 notan wrote: Both can cause blood glucose levels to rise. I have noticed other things people have said that change glucose levels and people report they also change achalasia symptoms. Stress, low carb diets, and exercise all change glucose levels. These things also change other things in the blood chemistry. Even if there are real connections here, one still has to wonder why these specific nerves and why such small changes would matter. Maybe because these nerves are already damaged by other things. I find these things interesting but I don't know what they could mean. notan, here is an interesting article. It states that “impaired gastric emptying is frequently associated with cardialvagal neuropathy and small-fiber dysfunction. Morphological changes in the vagus nerve are reported in some, but not all studies. Recent studies have implicated hyperglycemia as a cause of impaired gastric and small intestine motility during fasting and after food intake. Hyperglycemia delays gastric emptying in healthy and diabetic subjects.” http://neuropathymd.org/pdf/34/Treatment%20of%20Peripheral%20Autonomic%20Dysfunction%20of%20the%20Gastrointestinal%20Tract.pdf Maybe this is the answer. Sandi Groups Links · To visit your group on the web, go to: achalasia/ · Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 Nobody welcomed me.... :-( > > > The one thing that I've found consistently correlates to me having a spasm or trouble swallowing is a change in sleep, either too little or a lot more than usual. I'll be fascinated to hear what the neurologists have to say... > > > > Aloha , > > Thanks so much for your response. I'll be sure to include this in my list as well. > > If you have any more thoughts, please be sure to let me know. I was just reading some info about biofeedback and it sounds very interesting.thanks for bringing this up. > > I hope I didn't offend you the other day with my welcome...it certainly wasn't meant to come across that way. > > Well anyway, welcome again, it's great to have you as a member of our group. ;-) > > Sandi in No CA > > > > > > > ------------------------------------------------------------------- ----------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 I too have legs that "jump" at night, but I do not think it falls into the category of RLS. The cause of my legs jumping is a trapped nerve at about the level of T12 - just about where your ribs end. My spine here is a bit unstable and 'moves' or goes 'out' and a nerve gets trapped. My physio - who puts it all back in the right place again - has noted that when my A is bad so is my back ! Needless to say I seep very badly and very little. A question for our medical student - which spinal level does the vagus nerve come from and any other nerves involved in A? I can't find my anatomy text book ! Joan Johannesburg South Africajpearse@... RE: Neurologists for Achalasia> > > > My doctor has decided that I should see a neurologist for my achalasia and neuropathy. Funny, I've been thinking this all along, and now that I have the appointment, I'm a little afraid about going. I wonder if he'll have any brilliant ideas about achalasia.or if he'll even know what it is. :-)> > If anyone can think of any questions for me to ask of the neurologist, feel free to share your thoughts/ideas with me. > > > > , you are the only one I know of who is seeing a neurologist about achalasia. Do you find the neurologist to be of any help to you? > > Thanks,> > Sandi> > > > Holt-> > > > > > > > > > ----------------------------------------------------------------------------> > > > > > > > ----------------------------------------------------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 Holt- wrote: >... " ...Hyperglycemia delays gastric emptying in healthy and diabetic >subjects. " ... Thanks, Sandi. That is an interesting page. Some of the references in it are even more interesting. Check out this one: " Relationships of Upper Gastrointestinal Motor and Sensory Function With Glycemic Control " http://care.diabetesjournals.org/cgi/content/full/24/2/371 The author clearly believes that all of the gut from top to bottom is effected by glucose levels, including LES pressure, esophageal peristalsis, and esophageal sensory perception. At some levels affecting one way and at other levels the opposite way. It is not at all clear to me what this means for achalasia and nerves that may be damaged and not responding in normal ways. It is possible that this has nothing to do with the cause/s of achalasia, but it could have something to say about strategies for dealing with it. Those articles don't address hypoglycemia or even the lower end of normal levels. I would guess that achalasics often are at the lower levels because some end up eating so little. Also, we have problems after fasting as well as after meals. In other words we have problems at any level. Still it is interesting that some seem to have changes in symptoms, such as spasms, from things that affect glucose levels. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 Diane wrote: Nobody welcomed me.... :-( Diane, A warm and hearty welcome and AloooooooooHA! to you. Warm regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Thank you ... :-) My step daughter lived in Hawaii for years - she is a message therapist... now she lives in Co. Sprgs. -- In achalasia , " Dr. L. " <@D...> wrote: > Diane wrote: > > > Nobody welcomed me.... :-( > > Diane, > > A warm and hearty welcome and AloooooooooHA! to you. > > Warm regards, > > Quote Link to comment Share on other sites More sharing options...
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