Hi, well there is at least 2 of us. I had a provisional diagnosis about 6 weeks ago after having barium swallow xrays, awaiting an endoscopy under GA to confirm it.
A bit of background that led me there - I have had MASSIVE problems with my asthma for over 2 yrs now. Persistent cough, chest infections, coughing up phlegm 24/7, hoarseness, pain in my back left side ( thinking pleurisy) but ever test respiratory ran came back normal. Lung CT showed lungs clear, huge doses of inhaled steroids making no difference, oral steroids pointless etc. Can assure you what I have cannot possibly come under the category of normal!! Lost my job through being unable to function.
Constantly hoarse, feel like I have something stuck in my throat 24/7, coughing when eating and struggling to swallow. ( annoyingly despite all this I have not lost weight)
So with months between respiratory appts I had read that GERD and such can cause issues with cough. So GP agreed and sent me for an endoscopy, thinking we could rule this out as a cause. I could not swallow the camera, just gagging on it, but then I can't clean my teeth without gagging. Dr doing it as a day case lost the plot with me, and a complaint was put it, but that's another story.
Anyway had the xrays which showed various problems, went back to see the specialist and he explained the reason I could not swallow the camera was because of the achalasia. This made me feel a whole lot better. So going to do an endoscopy under a general for further investigation.
Apparently, the difficulty with swallowing and the lump in the throat feeling do not show up on an endoscopy anyway, but now they know of it they will do other searches in my oesophagus when I am in.
For me while getting any diagnosis is not good, rare and no cure even less good, but to actually be getting some answers is a massive relief. This for me explains away a lot of what we thought were asthma symptoms as well. I did not know that your oesophagus can produce masses of mucus that you cough up, this for me was where the infection was not in my lungs. Better than believing I am going mad and my head is making it all up.
Once I have had the endoscopy this specialist is going to send me across to gastro, who would perform this test anyway, but there is quite a wait for them.
I have found a facebook group where reading other people's posts has been a great help.
Sometimes it is not nice to be rare, but 2 of us in the club is a start.....lol