I think I may have Achalasia going to have a Manometry Test

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I so pleased that I came across this forum and the more I read post about this condition the more I think Ive got it.

Before I start to tell you my story (sorry its going to be a long one) I also want to add that I also suffer from Rheumertoid Arthritis (RA) which is an auto immune condition.  ie my immune system attacks my body.

I'll start at the beginning of my symptons.

Five years ago my RA was really bad and I was put on a course of oral steroids.  More or less straight away I started getting a very uncomfortable feeling in the middle of my chest.  I looked at the side effects of steroid and indigestion was one, so I thought that that was what it was.  However after stopping taking the steroids the feeling was still there so I saw my Gp who thought I had a hiatus hernia and was told to take a stomach protector every day.  This did nothing at all and the uncomfortable feeling continued on and off.. I also had problems swallowing my salavia and sips of water, my throat was very painful, I remember having to brace myself sometimes before I swollowed, especially during the night if I woke up.  I put all this down to my RA.

Because it is a few years ago and I cannot really remember the exact time scale of things but I then started having difficulty when eating of food getting stuck or really dragging on the way down.  Eventually the food would go down but it was really uncomfortable.  I went back to my GP's and had some sort of breath test done to see if I had any bacteria in my gut.  This came back inconclusive and my doctor told me that having an endoscopy done was really what I needed.  I didn't want this so I struggled on.  My GP did reassure me that he didn't think it was anything too serious because I had no other worry symptons.and it wasn't happening all the time.

In 2014 while on holiday having dinner the food got stuck again and something told me to go to the ladies and I ended up with my head over the toilet with the stuck food coming back up.  I could not even swallow my  own  saliva at this point.   I had a few more attacks of this bread and meat being the main culprits so in 2015 I was brave and had an endoscopy done.  Everyting was fine, biopsies were done and no   hernia was found.  I though I just had to shut up and put up with it and just learn to live with it.

In 2016 I had several attack one after the other and in the November when having an appointment with my RA consultant I asked if it was anything RA related and he said No, but you really must get yourself referred to a stomach consultant and find out  what the problem is.  

I did this and I saw a lovely consultant  January this year.  He was shocked that I had had this problem for five years before I had asked to be seen at the hospital.  He wanted me to have another endoscopy done to see if anything had been missed before and more biopsies and then to have a manometry test done.  After being told what the manometry test was I did decline this but said I would have the endoscopy, I had had one before and didn't find it too bad so I wasn't too concerened about having another one done.

Well, this endoscopy was awful, I think I was in a  bit of shock after it was done. Had loads of biopsies done and this time a hiatus hernia was found.  I am wondering if it was so bad because I had had the problem of fooding getting stuck and a visit to the ladies a few days before when out having lunch with my daughter and wondered if I could be a little sore.  I had a letter from the hospital ( I get a copy of what my GP gets) stating that noting was found with the biopsies and the next step would be to have a manometry test done in order to rule out achalasia and to delineate the hiatus hernia.

Well, I was straight on the internet doing some googling (I live it the UK) and I read up about it on the NHS website.  Virtually everything it said was what I was experiencing apart from weight loss, but I think that is when people just can't eat at all because of the condition. What really struck me about it and was the final thing that makes me think I've got it is that it stated that most people that have it also has some sort of auto immune conditions as well.  I decided to go ahead with the manometry test and am waiting for an appointment.  Not looking forward to that at all, but from what I've read its the definative test for diagnosis.  The only thing that is bothering me is if I am OK at the time nothing may show.

Anyway if you are still reading this I want to list whats happening and then for peoples opinions.

Normally I start with painful swallowing of salavia or sips of water.

I then get what I call a full feeling in the middle of my chest.

This then gets to be very uncomfortable.  I had a sip of water at 4am in the morning a few weeks ago which started a really uncomfortable feeling in my chest, could not get back to sleep.

Food then starts to drag when I am eating or it gets stuck and its painful when it starts to go down.

If I have toast or a sandwich with a dry filling on 99% of the time I have problems.  It make me have a bout of hiccups and sometimes it makes me sneeze, which sounds stupid I know.   Sometimes I also get a gurgling noise in the back of my throat.

Like I've said before the main food that I really have problems with is meat and bread/toast.

I have found that if food gets stuck and I arch my back bacwards it helps to dislodged the food.  I have read that this is does help with achalasia.  

i know the condition is very rare, from what I've read there is 6,000 people in the UK diagonosed with this condition and I think that I'm going to make it 6001 very soon. 

Any feed back would be most appreciated and anyone whos had the manometry test done....Whats it really like?....I can't think it can be any worse than the second endoscopy.  

If you are still reading this, many thanks.   I can't get spell checker to work so forgive me if my spellings not too good.

Paula 

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5 Replies

  • Posted

    Thanks for sharing your story! This group has lots of caring and knowledgable members! smile Yes, the endoscopy can be awful; I find the NHS sedative really helps... However, the manometry test is much less invasive if its the ultra thin tube down the nose procedure... Dont take my word for it though; Lets see if everyone agrees... smile Will follow this thread, and wishing healthy karma and good luck your way! N.

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  • Posted

    I have recently had that ma no me try done. It was not to bad just some well a lot discomfort but I stuck it out to have test done to see what was wrong. Yep Achalsia! Now to see surgeon on the 28th Yee Haw what next !

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  • Posted

    Thank you to both of you for taking the time to reply.

    Just thought I would tell you about what happened last Friday.  I had a routine check up at the hospital for my RA and saw a new nurse.  She asked if I had any other health problems and I started telling about things.  She then started tellling me all about the condition and what happpens during the procedure.  I asked how she knew so much about it,, turns out that she use to be a sister in the endoscopy suite where they do it.   She asked me a few question as well and she thinks it sounds like achalasia and said I really must have the test done to f ind out.  Later that day I had a telephone call offering me an appointment for the 11th of next month at 9am, so its all booked.

    I am wondering if she had a wander over to the endoscopy suite, (it's opposite the RA clinic) to tell them to phine me before I change my mind.  Just think its such a coincidence.

    Paula

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    • Posted

      Yup, life sometimes feels like a string of planned coincidences smile ... 

      I am sure you will not be unpleasantly surprised by the test..If its the one I think it is... 

      The test shows the pressures along various points in your oesophagus; so it is just a very simple pressure measurement. I think they are looking to see if pressure waves are low at the top and high at the bottom (where the LES sticks). So, its not really like a normal blood test etc (for example|), which offer a black and white answer; but they may make a formal diagnosis from it ... I dont usually give medical advice on here as there are others with much better experiance; so hopefully you will get some more responses… 

      See how you get on though, and see what your Dr recommends do next. There are tons of threads on here about medications, treatments, and lifestyle etc…Lots to think about in making your choices…

      Until then, all the very best, and may the sun shine! ..smile 

       

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    • Posted

      Thanks for the reply.  The test is booked for 11th May at 9am.  Can't eat or drink anything for 6 hours before.  Had all the information on it.  Very, very nervous about it.  Just had cataract surgery done last Sunday, wasn't nervous at all, but this....Oh Dear.... getting in a bit of a state just thinkng about it.  Its just the thought of something going up my nose. 

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