Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 hi, I am vanessa I have a 16yrs old son with aspie,he isHF with isit.I have enjoyed the helpful hints.Ican see alot in my son from what others are going through.from him going without ashower,to the food issues.I am looking for local social groups and homeschools.we are in southfield.I really feel you are a wonderful group of people. angel blessing vanessa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Welcome ! Feel free to join in anywhere you like! RoxannaYou're UniqueJust like everyone else... ( ) hello new here! hi, I am vanessa I have a 16yrs old son with aspie,he isHF with isit.I have enjoyed the helpful hints.Ican see alot in my son from what others are going through.from him going without ashower,to the food issues.I am looking for local social groups and homeschools.we are in southfield.I really feel you are a wonderful group of people. angel blessing vanessa No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 Hi , Sorry it took me awhile to get back with you. Monitoring two support groups is making my head spin. Here is my story. In 1999 I acquired the rare condition called " Mal de Debarquement Syndrome " (MdDS) after coming off a cruise/flight. It causes a rocking sensation, fatigue, balance problems, etc. At onset I felt like I had a terrible flu with chills extreme fatigue. I don't know if it was due to my nervous system completely being on overload trying to adjust but I also started choking on food/water, however that resolved after a period of time. In early 2008 I started experiencing the same choking on food/water again, only this time it was with a vengeance. My MdDS and spasm definitely feed and play off each other and with both conditions must keep my stress levels to a minimum. I felt it mostly at the collar bone a choking feeling and gasped for air. I had a tremendous amount of mucus when I would try to eat. Regurgitated food/water/mucous and started losing weight. My initial barium swallow, manometry, 2 endoscopies with dilation attempt was performed in my hometown of Springfield, MO. Due to my MdDS, my Gastro. decided to send me to -Jewish in St. Louis. The first visit I was prescribed some meds. However they did nothing. I also have a small hiatal hernia just below spasm. I was diagnosed with diffuse esophageal spasm with hiatal hernia. The second visit I was given another manometry and Endoscopy with Botox. I have had three Botox injections now with each not lasting as long as the first. I have had two endoscopies with Botox this year, on 2-8-2010 my cricopharngeus was normal, on 8-19-2010 it was abnormal. Gastro. said that he could barely pass scope through spasm and there was food sitting on top of spasm. He told me that he now suspects an achalasia variant. I am waiting on a call from to have another manometry and possibly meet with surgeon Dr. Meyers. I have talked to two individuals in this group now, and Michele. told me if surgery is indicated that I should see Dr. Rice at Cleveland Clinic. I received an email this a.m. from Michele who lives in St. Louis suburb who was diagnosed at , interviewed the surgeon I am suppose to have there (Dr. Meyers) and ultimately decided to see Dr. Rice. Even though I have only observed this group it is apparent to me that I have to pick the right surgeon and that looks like that is Dr. Rice in Cleveland. I have a question: Has anyone in this group ever been diagnosed with Lyme Disease, Aseptic Meningitis or autoimmune disease? Donna H. > > Hello Donna, > > I have lived with the dx of " diffuse esophageal spasms " and had difficulty > swallowing for many years, it really took getting to the right doctors and > having the right tests to confirm that I did have achalasia. Please tell us > what your symptoms are? > > > This group is full of wisdom and helped me to understand what I needed to do in > order to get the help I needed. Everyone here will stress the fact that you > need to get a diagnosis from a manometry test and barium swallow....along with > the scope (which you already did). Then it will be very important to research > an " expert surgeon that deals with achalasia and has done many surgeries with > good success. I would not let just any general surgeron touch you, IMO. > > > In the hands of a great surgeon, the myotomy could fix things with great > success, without some sort of treatment, you could risk developing a severely > stretched out esophagus over time. Tell us how long you have had this condition > and what your sysmptoms are? > > > Julee So Calif.  > > > > > ________________________________ > From: Donna <donna9513@...> > achalasia > Sent: Thu, October 7, 2010 11:06:03 AM > Subject: Hello new here! > >  > Hi my name is Donna, > > I was initially dx with diffuse esophageal spasm, however at last endoscopy my > Dr. said that he could barely pass the scope through spasm and now suspects that > I may have an achalasia variant. I have been getting Botox injections that have > been lasting less time with each one. > > I am due to go back to -Jewish in St. Louis soon for another manometry and > to discuss possible myotomy. I know little about achalasia and myotomy, but from > what I have read seemingly myotomies sometimes have to be repeated after some > time. Is that the norm? > > I would appreciate any info you may provide. While doing some research today I > found an article on Gerd. Which I don't seem to have, but I thought I would > share it with you that do. > > I also have had a rare disorder since 1999 called Mal de Debarquement syndrome. > > http://www.physorg.com/news175776249.html > > Thanks! > Donna H > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2010 Report Share Posted October 11, 2010 Donna wrote: > Hi my name is Donna, Hi, Donna. > I was initially dx with diffuse esophageal spasm, however at last endoscopy my Dr. said that he could barely pass the scope through spasm and now suspects that I may have an achalasia variant. There has been some speculation that DES can in some cases progress to achalasia. > I have been getting Botox injections that have been lasting less time with each one. Botox is a protein and the immune system can learn to attack it. In some people it happens right away and the Botox does not work. In others it never happens. In yet others it happens a little at a time. Sometimes it just stops working all at once. Because the immune system can target the Botox the tissue where the Botox is can become inflamed which leads to scarring. If you get a myotomy later the scarring can make it more difficult for the surgeon, possibly leading to perforations or an incomplete myotomy. > I am due to go back to -Jewish in St. Louis soon for another manometry and to discuss possible myotomy. I know little about achalasia and myotomy, but from what I have read seemingly myotomies sometimes have to be repeated after some time. Is that the norm? No, it is not the norm, though from reading the messages here you could get that idea and I am sure some people here believe it is the norm. Sometimes myotomies do have to be repeated. It may be due to the original one not being done completely, which is one reason it is so important to get a great surgeon that does lots of these. It may also be that the original myotomy is not enough after the esophagus changes with time making it harder for food to pass through the lower esophageal sphincter (LES). Not everyone is going to have the same changes. Sometime scarring will occur at the myotomy, either as a result of the surgery (that usually happens soon) or due to acid reflux (which can happen years later). Scarring and the muscle reattaching to itself can often be taken care of by a dilatation. It is not too uncommon to need a dilatation sometime after the surgery. There is no perfect treatment for achalasia. Some people have better results than others. Results can be anything from excellent to failure, but good surgeons as some of the best centers have results that are over 90% successful (depending on how you measure success), and then there is that other 10%. Someone in that 10% is more likely to seek a group like this. > I also have had a rare disorder since 1999 called Mal de Debarquement syndrome. I hope you get over it soon. It must be terrible. Quoted from another message: > Has anyone in this group ever been diagnosed with Lyme Disease, Aseptic Meningitis or autoimmune disease? The question of autoimmune diseases comes up regularly. There have been some with various autoimmune diseases. I am not sure about the other two. It seems like someone had Lyme disease. You could search the messages from the web site for Lyme or meningitis. Finding someone that did would not be very surprising considering how many people have posted messages. I did a search of PubMed for combinations of achalasia with either Lyme or meningitis and found nothing. A search for a combination of meningitis and vagus (vagus nerve) did produce some hits. Being that the vagus nerve is a cranial nerve it should not be surprising that meningitis could damage the vagus nerve at the jugular foramen and brainstem. Damage to the vagus nerve could lead to esophageal motility problems among other things. A similar search with " lyme " did not get any direct information about damage to the vagus nerve but it did find some cases of laryngeal nerve damage. That is close enough that one could suspect that the vagus could also be effected by Lyme disease, but damage can be very specific in some disease so it may not be connected -- hard to say. A search for " cranial " (cranial nerves) with " Borrelia burgdorferi " (Lyme) was more interesting but there was not enough information in the abstracts to know what vagus symptoms may have resulted, if any. I didn't have time to do it, but I suspect you may get some interesting hits on " Jugular foramen syndrome " and " lyme " on a wider search than just PubMed. notan Quote Link to comment Share on other sites More sharing options...
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