Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 When we have something wrong with our bodies we think it is a big problem and we complain about it. That is how we are. I do not think you are complaining to much. You are just concerned with what is going on with you. We all understand what is going on and we feel for you. I was suppose to go back on Wednesday for another endoscope but I was informed that my appointment is set for the 30th of March. Oh yeah....lol The doctor I am seeing wants these tests done first before he directs me on what should happen next. I am going to see if I can talk to my family doctor to see if he can get me to a neurologist. Like an old math teacher told me to do in math... Just keep plugging and chugging. Well, I use that in everyday life... Plug and Chug things will work out in the end....lol. Thanks for your input. in Suffolk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 Hello All, especially : You were questioning other factors going with Achalasia and suggesting a neurologist. I am wondering if anyone knows of ANY connection of Achalasia and PTOSIS (the drooping of the upper eylids causing periferal loss of eyesight???) I AM seeing a Neurologist. I go back to see him on Thursday, and hopefully he has some results. He has had me do sooo many tests, and I have had pins and electric prods from head to toe, so I really hope the results are clear. In September and October, I had 4 surgeries (2 each eye) to correct Ptosis. After the 4th surgery, the eye doctor decided the Ptosis was indicating another underlying problem. It seems there are a few things that Ptosis and difficulty swallowing have in common. That is why I had to see a Neurologist. He thought Occularygeneal Muscular Dystrophy, Myasthesnia Gravis and 3 other equally appealing diseases. At this time, absolutely NO ONE thought about Achalasia. I was still able to push food with plenty of liquids then. When the inability to swallow solids appeared, the GI entered the picture, and, of course, my regular doctor was there throughout. Everyone was focused with the possibility of diseases that are linked with Ptosis, so I had 26 doctors appts, tests, procedures and blood work. The only one not eliminated so far is the Myasthesnia Gravis, and I am hoping that is gone when I see the Neurologist on Tuesday. It was only after the process of elimination that everyone is agreeing on " Achalasia " . I was on the web searching last night for a connection of Achalasia and Ptosis, but I could not find anything. Does anyone else know of one? Some of you are so terrific with finding this stuff, I am NOT a internet whiz! I have an appointment with a surgeon (Dr. Luketich UPMC Presbyterian Hospital, Pittsburgh), tomorrow morning. (Of course, I live on the East Coast of USA and we are bracing for a major snow storm and I am selfishly worried it might get cancelled). I just cannot wait to see this doctor, and if it gets cancelled, I am concerned I will need to wait a few more weeks. , I agree that there is probably more to this disease than meets the eye. What a roller coaster, but in reading about my new friends, I realize I am not as bad as some of you, so I need to quit complaining so much!!! Thank you, all. I will watch the board with interest. Kathie in Pittsburgh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 Kathie wrote: I am wondering if anyone knows of ANY connection of Achalasia and PTOSIS I only had time for a quick search and didn't see much. ....He thought Occularygeneal Muscular Dystrophy, Did you maybe mean, oculopharyngeal muscular dystrophy, which is predominantly seen in French Canadians? Typically this would show first as ptosis and next as achalasia of the UES, upper esophageal sphincter. Most of us have achalasia of the LES (lower). Either way this does seem kind of close to what you describe. The only one not eliminated so far is the Myasthesnia Gravis, We will hope for something better. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 Hello Notan: Last night I searched for several hours, but came up empty. It just seems you, Maggie, Joan and Sandy have magic fingers when someone asks a question. The eternal optimist ... always expecting immediate answers!!! I better get used to this disease, cause that just ain't happening! Yes, that is what I meant .. I cannot pronounce it, must less spell it. They have ruled it out. I am of Irish/Scotish lines ... no French connection. Plus they did an unbelievable amount of tests. None of my tests came back with " Classic " Achalasia. Although I wonder if they did another Barium Swallow now, if it would look different. I am going to the doctor tomorrow and not eating anything after 8PM tonight, just in case he wants to do ANY type of test that requires fasting. Skip the ensure and tea for breakfast and hope I get an answer of some kind! If this is able to be controlled, I will never eat anything again without appreciation. We take so much for granted, and never think just how incredible our bodies are when they work properly. I always read your postings with interest. Thank you for sharing your discoveries. Kathie from Pittsburgh -- In achalasia , notan <hastings@d...> wrote: > Quote Link to comment Share on other sites More sharing options...
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