Positive I have Alchalasia

Hi everyone. I am very new here and really need to speak to fellow sufferers with Alchalasia. I am trying to find out what options are best for me, as I am being passed from pillar to post and back again with varying treatments and diagnosis.

My story is as follows and this related to my own personal experience of this hideous and soul destroying illness.

In 1998 I had a motorcycle accident and spent three weeks in hospital after suffering a collapsed lung, facial injuries etc. Whether this is inter-related to the onset of my illness, I have no idea, but around two years after my accident I noticed a very slight change in the way I swallowed food. The changes in my digestion were so slight, that I did not notice until now, when I think back to when this possibly could have initialised itself.

Until around 18 months ago, swallowing food was easy enough, and only rarely did I suffer any \"symptoms\". However, over the last year my condition has gotten worse twenty fold! I now have problems swallowing and retaining any kind of food. Constant regurgitation and heartburn night and day. I have also noticed some sufferers on here talking of pains in the central part of the chest. My pain is directly under the centre chest bone and can come on at any time. The pain is intense, and when this first happened, I genuinely thought I was having a heart attack.

My eating \"disorder\" can be \"OK\" one day and horrendous the next. There have been times when I have had to go without food for up to four days, which in my line of work which requires constant attention, is a no no as it totally drains my energy. When I say \"OK\" I mean the symptons are still there, but to a lesser extent.

There are days when I cannot even swallow and retain water. I've read that people find cold water a help. To me this is a hinderance, and I find room temperature water to be more favourable. On the subject of drinks, fizzy drinks, such as Coca Cola, Fanta, and Sprite can help one day to \"gas\" me up enough to swallow, and on other days can have a completely reversed effect in which my throat spasms and makes me vomit. When I vomit now, I am noticing a white \"frothy\" bile coming up with whatever else is being vomitted. The consistency of this bile is like a thin yoghurt, sometimes transparent and sometimes white. This particular sympton has become more commonplace.

At night now, I sometimes wake with a serious chest pain (heartburn) and usually wake with aching back or shoulders. Since January 2011, I have had constant pain in my left shoulder which has been put down to a trapped nerve, however, no amounts of massaging or physio make it any better. I still have the pain which extends up the left side of my neck and is quite severe at times.

To treatments.

I first went to the GP with complaints of sticking foods, and constant heartburns, particularly at night. I was given Omeprazole for this. No change.

I was then tried on various doses of Lanzoprazole, and gain , no change.

Referred to hospital for a barium swallow test. The radiographer told me that I had a hernia. Fine, great I thought, problem solved, small op and all will be fine. Two weeks later the results from the barium tet arrived with my GP. She told me it was not a hernia! Who do I believe?

Symptoms became worse, so I asked to be referred to a specialist. I was given a half hour consultation and told I would have to be dilated. I was told the dilation can ease symptoms for around two years. My first dilation lasted three days. I then had four further dilations in as many months!

Over that four months period I saw three specialists all saying its not Alchalasia. So, on a holiday trip to Poland, I paid a small fee, saw a specialist there. I had an endoscopy which revealed stomach ulcers and a very dilated eosophagus! He was amazed when I told him how many dilations I had had in a four month period. I was then placed on a three month course of a tablet (medical name) ControLoc (20mgs three times a day). These seemed to control my heart burn quite well, and whilst on them, had very little heartburn at all.

Whilst in Poland I was given a proper barium test laid down on my side on the XRay table. The riadiographer there said he had never seen anything like it! He could not understand how I was not a stick insect as nothing was passing into the stomach. I have the Xray results which the consultant there confirmed is definitely Alchalasia. The specialist has been working on throats for some thirty five years, and has said to me that my case is the worst he has ever seen in his career.

Back to the UK, and I have been suffering even more, and have been passed to yet another specialist who has to carry out a manometry test. I have tried this once before and because of my extremely sensitive gag reflex, was unable to have the tube passed through my nasal cavity. Apparently they can do a shorter test using the tube in the mouth rather than down the nose.

I am totally convinced I have Alchalasia, but my UK specialist and GP are refusing to acknowledge this and keep trying other \"treatments\" saying its just reflux etc. Everything I have read up on about Alchalasia points to my exact symptoms day in, day out.

My XRays from Poland shows a narrowing near the stomach so small, that the specialist said its a miracle that I can actually eat or drink ANYTHING. Who do I beleive? Who do I trust, what can I insist on before I totally lose my mind? This condition has effected me in so many ways, and has totally changed my quality of life.

Sorry for the long first post, but I wanted to get it all off my chest.

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