Hi All,
First, it's so great to find this site. Second, my experience so far. I have been back and forward to the hospital with a few symptoms. I also have vitamin B12 deficiency and I think this has been clouding a diagnosis so far. I've been under treatment for GORD/GERD with no success. On my most recent visit to see a consultant again - after about an eighteen month gap - they finally took on board that I really don't have the heartburn type pain, all I have is huge difficulty swallowing which has been getting worse over the past year and a half.
It's been ongoing for about five years now - in fact the first bout was caused by potatoes! Obviously at first I thought it was a one off, but then there were more bouts and now I'm lucky to go a day without a full on chokng incident. When I say full on, I mean having to go to the bathroom to deal with it. Producing ridiculous amounts of saliva and unable to shift the stuck food either back up or down. Sometimes the eventual shifting takes five or so minutes, but sometimes far longer. I had a 45 minute fight with a tiny bit of toast last week. While I'm doing this, I can't drink anything, because it just gurgles straight back up again.
So, although I haven't been officially diagnosed with achalasia yet, I am hoping that this will be the diagnosis. Not because it's easy, but because I don't know how much more of this I can cope with. I no longer eat socially with friends because there have been too many embarrassing incidents. I initially lost a lot of weight, but have now gained some and am maintaining most of the time. It's causing other problems as well. I've pulled intercostal muscles with heaving as I regurgitate which is pretty painful and of course, as you all know, it plays havoc with your state of mind. We have to eat and it just becomes too much when every day you're wondering what will make you choke, when will you choke, will today be a lucky day, how bad will it be.
I'm having a barium swallow - I first had one of these about 4 and a half years ago when they were looking at it as a throat problem. At this point the person carrying it out noted oesphagal scarring and a hole - which he showed me - I've not been able to get anyone else to fully take this on board since and the results are no longer in my records due to a change in computer records at the hospital. I'm also having an ultrasound due to tenderness in my lower abdomen, blood tests and giving a stool sample. Then they are talking about a camera through my nose and down my throat to see how the muscles are working (er, they're not, I can tell you that now!) and then hopefully at some point in the not too distant future I'll get a solid diagnosis and some treatment.
I have been given various drug treatments in the last two years. All I've noticed is the condition worsening and the tablets getting harder to take. I now have to take any antibiotics in liquid form and can only manage to swallow the smallest tablets.
Re. foods that trigger it. I've found that just about anything can, but some are worse than others in their immovability. I rarely eat meat, because once it's lodged it is so hard to shift. The same with root veg, tomatoes, cucumber and funnily enough while bananas will shift they are now off the menu because they cause an episode without fail. I've stopped eating fruit as well because it's too hard and troublesome.
Sorry for going on, it's just so nice to have somewhere to talk about this, to people who have some idea of what I'm experiencing. Any tips gratefully received. Also if it sounds to you like achalasia could be the final diagnosis, that would be helpful too. Mostly best of luck to everyone. I really do feel your pain!