Guest guest Posted March 15, 2012 Report Share Posted March 15, 2012 Hi , Yep, I was diagnosed in Sep 2011, had a HM in Nov and it didn't work. Just had my first dilation 2 weeks ago. Now realize I am back to where I was just before my HM!!!! Can only swallow in rice size pieces, mush and liquids!!! I don't know whether the doctors out there really know what they are doing. Do they want us to get really bad, so that any tiny improvement is seen as great! I don't understand how anyone can truly get on with normal life with A. Still waiting for a significant improvement. So , there are lots of us out there where we don't get a good result with the HM. Welcome to the group! (Australia) > > Hi all, > > I am 26 yrs old was diagnosed with A in Dec 2011 and had a HM on Jan 12,2012 and I thought everything was good until a couple of days ago. I am starting to have problems eating/drinking again. Has this happened to anyone else? I have also noticed a horrible numbing and tingling in my legs and arms/stomach and was wondering if this has happened to anyone else. I know A is considered neurological and now i'm starting to wonder if that is an effect of the disease. Any help/advice would be really helpful. > > Thanks! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2012 Report Share Posted March 15, 2012 Hi, ! (girl/boy?) Tingling/numbness -- I've been having some issues, mainly legs, since the Heller. But " after " doesn't mean " because of " . . . . My primary care doc thinks it may be due to the starvation that occurred *before* diagnosis, with a resulting B12 deficiency. However, labs aren't back yet, so. Are you taking PPIs? That might affect your ability to absorb/utilize B12, also. (Peripheral Neuropathy is a side effect of B12 deficiency.) I've also had pedal edema after both hospitalizations (1. ER 2. Heller) and kind of think that may be pressing on some nerves. When I went looking on the nets, the pedal edema seems to happen to a lot of people after hospitalization for *anything* ~~ I've seen people attribute it to: spine operations, brain operations, breast cancer, stomach surgery. . . . name it. Only thing these ALL had in common was the peep was in bed in a hospital for more than 24 hours. As far as I'm aware, Achalasia itself is confined to the esophagus/LES ~~ but that *does NOT* mean one can't get OTHER diseases. . . . Had my Heller Dec. 27, and it's been slow but steady improvement. Set back when I try to leap forward too quickly. Bon Courage! in WV > > Hi all, > > I am 26 yrs old was diagnosed with A in Dec 2011 and had a HM on Jan 12,2012 and I thought everything was good until a couple of days ago. I am starting to have problems eating/drinking again. Has this happened to anyone else? I have also noticed a horrible numbing and tingling in my legs and arms/stomach and was wondering if this has happened to anyone else. I know A is considered neurological and now i'm starting to wonder if that is an effect of the disease. Any help/advice would be really helpful. > > Thanks! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2012 Report Share Posted March 15, 2012 Just chiming in to say that my b12 is low normal (240) which is not considered deficient (under 200). However, I get tingly in my feet and legs and sometimes my legs feel very twitchy. I am also having a whole host of other symptoms...brain fog, extremely low energy etc. My dr. decided because of my eating issues with A that I should go ahead with B12 shots. I've only had one and it will take a while to gauge results. Good luck! > > > > Hi all, > > > > I am 26 yrs old was diagnosed with A in Dec 2011 and had a HM on Jan 12,2012 and I thought everything was good until a couple of days ago. I am starting to have problems eating/drinking again. Has this happened to anyone else? I have also noticed a horrible numbing and tingling in my legs and arms/stomach and was wondering if this has happened to anyone else. I know A is considered neurological and now i'm starting to wonder if that is an effect of the disease. Any help/advice would be really helpful. > > > > Thanks! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2012 Report Share Posted March 15, 2012 Hi all I don't know if this would have any relation to what you're suffering with, but I know that since my HM and my multiple (and ongoing) dilatations I still have problems swallowing and I'm coming to the belief that some of the problem is to do with the peristalsis (lack of) in the eosophagus as opposed to just the LES problem. My surgeon says that anyone with A will suffer with motility problems in the eosophagus and not much can be done about it. SO I persevere with lots of water when eating. Not sure the dilatations are making any difference anymore! But I am still losing weight so need to keep going with them. Someone mentioned magnesium earlier - I took a 2 month course of magnesium, as my nutritionist recommended it for being good for nerves and muscle contractions, and I haven't had a spasm in over a month. Not 100% sure it has helped, but can't identify anything else that might have stopped them! (Ireland) > > > > Hi all, > > > > I am 26 yrs old was diagnosed with A in Dec 2011 and had a HM on Jan 12,2012 and I thought everything was good until a couple of days ago. I am starting to have problems eating/drinking again. Has this happened to anyone else? I have also noticed a horrible numbing and tingling in my legs and arms/stomach and was wondering if this has happened to anyone else. I know A is considered neurological and now i'm starting to wonder if that is an effect of the disease. Any help/advice would be really helpful. > > > > Thanks! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2012 Report Share Posted March 21, 2012 Hi ,  I get numbling and tingling in my arms/legs but also my hands and feet. Not sure why at this point but I am going back to see my GI on April 2nd for EGD and biopsies. I was thinking I have poor circulation, even though at 42 I am pretty active. I was just diagnosed on October 2011 and haven't had surgery, but was dilated after losing 35 pounds. In the past 4 1/2 months I have managed to keep 5-10 pounds on, which changes every week so I can feel your pain. This is a tough disease to swallow for many ( pun intended ). I hope you find relief soon.  Kim A Kenosha, Wi ________________________________ From: kgrumpy19 <kgrumpy19@...> achalasia Sent: Thursday, March 15, 2012 12:20 AM Subject: HM question  Hi all, I am 26 yrs old was diagnosed with A in Dec 2011 and had a HM on Jan 12,2012 and I thought everything was good until a couple of days ago. I am starting to have problems eating/drinking again. Has this happened to anyone else? I have also noticed a horrible numbing and tingling in my legs and arms/stomach and was wondering if this has happened to anyone else. I know A is considered neurological and now i'm starting to wonder if that is an effect of the disease. Any help/advice would be really helpful. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2012 Report Share Posted March 21, 2012 I think the thing with Achalasia is learning to manage the disease, as it applies to each of us. We all have differnt symptoms, some of which can be debilitating at times, but part of moving past that is learnign to " live " with it. Like it or not, some do better than others! I look forward to the day where I feel I have some narmalcy but personally I am trying what little I can ( 7up helps me to make food go down -although I get some spasms from it the end result is better ) and have also learned I have to keep a softer diet.    I can only wish for all of us to have better results. KimA  ________________________________ From: lindsayaus <lindsay_kite@...> achalasia Sent: Thursday, March 15, 2012 1:23 AM Subject: Re: HM question  Hi , Yep, I was diagnosed in Sep 2011, had a HM in Nov and it didn't work. Just had my first dilation 2 weeks ago. Now realize I am back to where I was just before my HM!!!! Can only swallow in rice size pieces, mush and liquids!!! I don't know whether the doctors out there really know what they are doing. Do they want us to get really bad, so that any tiny improvement is seen as great! I don't understand how anyone can truly get on with normal life with A. Still waiting for a significant improvement. So , there are lots of us out there where we don't get a good result with the HM. Welcome to the group! (Australia) > > Hi all, > > I am 26 yrs old was diagnosed with A in Dec 2011 and had a HM on Jan 12,2012 and I thought everything was good until a couple of days ago. I am starting to have problems eating/drinking again. Has this happened to anyone else? I have also noticed a horrible numbing and tingling in my legs and arms/stomach and was wondering if this has happened to anyone else. I know A is considered neurological and now i'm starting to wonder if that is an effect of the disease. Any help/advice would be really helpful. > > Thanks! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2012 Report Share Posted March 25, 2012 wrote: > > ... I have also noticed a horrible numbing and tingling in my legs > and arms/stomach and was wondering if this has happened to anyone > else. I know A is considered neurological ... > Tingling legs and arms is not a normal part of achalasia. This would be a different type of nerve than the ones damaged in achalasia. If there is a connection I think it would be either that you are eating a very unbalanced diet lacking something you need, or you have another problem besides achalasia. There is also a small chance that you have something that is causing the tingling and perhaps the achalasia is secondary to that, not primary. (Probably unlikely though). notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2012 Report Share Posted March 25, 2012 wrote: > > ... My surgeon says that anyone with A will suffer with motility > problems in the eosophagus and not much can be done about it. SO I > persevere with lots of water when eating. ... > Yep, lack of peristalsis is the considered the main feature of achalasia, so water and gravity are used to produce a hydraulic ram to move the food through the LES. notan Quote Link to comment Share on other sites More sharing options...
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