First post

Hi, I know this is an old post, but I would like to know if you had a diagnosis. I am having the same symptoms at the moment and waiting for a urgent Barium Swallow.

I was wondering the same thing sbuddy as Merryl was?

Did you get any answers?

Any help?

Did they find out anything that was wrong?

How are you now?

I think we would really both like to hear from you.

And how did you go with your tests Merryl?

I have suffered from Achalasia for almost 13 now in a few months.

My oesphagus is so unco-ordinated that it can not propel food & fluids along it.

It causes me massive amounts of pain when my oesphagus goes into spasm. Imagine a heart attack that goes on and on for hours to even days.

My local hospital won't treat me for pain as they don't believe, although they have had Doctor's write them letter's & have meeting's with them, that my disease does NOT EXIST. So when I come in crying in pain. Unable to breath. I am just faking because I am just "Drug seeking!"

This hospital has a VERY bad legal negligence record, so........I just don't go anymore.

I avoid foods that set my pain off. And stick to very soft foods, with lot's of sauce or mayo etc on it. And warn drinks as ice cold one's set off my pain. Where most other Achalasian's use icy cold water to settle their spasm.

I also enter hospital every 3 months. I have for the last 13 years, for a 2 night stay. It used to be a 4 hour day stay with light sedation, now it's a full general anesthetic & the 2 night stay for pain control, on massive amounts of pain meds & muscle relaxants.

This I have to do for the rest of my life.

I can't have surgery to fix my Achalasia. It's a bit hard to explain.

I hope this get's one or both of you & that you are well.

Cheers.

Hi Redrecks,

I am still waiting for a Barium Swallow, it has been 4 weeks since my Dr referred me. I rang the surgery on Tuesday to ask him how much longer I will have to wait and he said he will chase them up. He told them it was urgent when he done the letter.

He gave me Ensure drinks for nutrition but they upset my stomach so I stopped them. He gave me different one's now but have not tried them yet.

I hope I hear sometime next week about the scan. Some day's, I am better than others. I don't really know what is wrong yet until I have the scan.

I am sorry to hear about the pain you have been suffering from, and for a long time too. It must be awful because you can't have an operation either. I get pain in my upper oesophagus but not every day. I am okay as long as I eat soft foods but sometimes that can stick in the base of my throat and cause gagging. I eat mash potato with gravy for my evening meal mostly.

Hope you are feeling okay at the moment.

Best wishes

Your GP should be able to prescribe some high energy supplement drinks that should at least maintain basic nutrition levels

MERRYL

I find it really difficult on here to work out who has actually responded to who?

Hence why I put the name in.

They discover I had Achalasia, apart from my severe symptoms.

I had an Endoscopy & a Manometry test.

Who ever invented Manometry test should have one down every day for the rest of their lives. And their familie. They are cruel.

Then I had a Barium Meal. Yum. Yum. Not!

That what was proved beyond a doubt I had Achalasia.

Laying flat on my back I could not for the life of me swallow the liquid, by this stage. It just would not go down. Like a wall had come up in my throat.

Finally I got to stand up to take swallows.

So I am standing there, and then the Radiologist goes & get's someone else from the passageway.

In the end there is about 6 people in the room and all I can hear out the door is " Come! Come! Come and have a look at this. You will never see this again ever. It's an achalasia patient."

I felt like and was a total Freak Show.

i certainly don't mind if Medical Personal want to look, listen or touch, but ask first! You know?

That's how I found out I had Achalasia.

I sat in the waiting room, waiting for my films, I had a pretty good idea what Achalasia was.It wasn't what we were testing for. But I still sat there & cried.

It must have been something bad for people to act like that?

When I got home & read up about it in depth. I was floored.

MERRYL I REALLY hope you don't have Achalasia. That the test comes back as some minor & benign.

This is a horrible life with this.

Hospital's.

Pain.

Starvation.

Malnutrition.

Dehydration.

Scopes.

Botox.

Balloon Dilations.

IV's.

Infections. And that's in a goo month.

It never ends.

REDRECKS

I got the same problem, don't know who have replied to my messages.

The tests that you had sound awful. I read up on the Manometry test a couple of weeks ago, and I hope I don't need that done. I hate anything that is put down my throat. I hope they can diagnose me with the Barium Swallow, when I finally get an appointment. Not sure if an endoscopy shows Achalasia. If it does, this was not mentioned when I had the procedure.

Do you have problems with food sticking in your throat/chest? I also get a lot of bloating after eating.

I can't imagine what you are going through, it all sounds dreadful.

Take care

Merryl

Hi, I have been suffering for years now with swallowing problems and now for the last 6 months am living on soups and liquidised food. I was finally diagnosed with oesophageal motility disorder and given various mess which all did not agree with me. I am now waiting to see consultant again. I get pain in my back after eating and some nights am unable to sleep. Feel really low mood at times, but comforting to see other people in the same boat.

Janine

Hi Janine,

Is oesophageal motility disorder the same as Achalasia. After reading other people's posts, who has it, I am hoping I have something else that is easy to cure. I hate the dry gagging/heaves, do you have this? I don't go out far now for fear of having an attack.

I have thought about buying a liquidiser so I can eat more normal meals instead of living on soups. Are meals easier to eat with a liquidiser? I have lost over 2 stone and don't want to lose anymore.

Merryl

Hi Meryl,

My problem is slightly different as my problem is my upper oesophageas not lower but I have the same difficulty in swallowing solid foods. I do not get the gagging just the problem if something is not soft enough I can feel it in my throat. I liquidise all my foods, mince is the best as it is partially soft when it is cooked and then liquidise it. Veggies are very good to liquidise too. I am trying to eat better as I guess nutrition is really important and am beginning to feel unwell due to lack of it.

Hi Janine,

I seem to swallow okay but food gets stuck in the base of my throat, so I don't eat any solids at all now. After the food goes down I get chest pain and then gagging but no food coming up. It is a dreadful feeling. Mine seem to be in the upper oesophagus too.

I asked my Dr If I could have nutrition drinks (Ensure) but they gave me cramping pains so had to stop them. Like you said, you start to feel unwell if you don't eat enough. I feel tired and weak and can't be bothered to do anything.

Can't you have an operation for your condition.

Hi Meryl

Have you had a manometry as this will indicate if the problem is upper or lower. I too am unable to eat solids but can eat crackers with something very smooth on it like hummus a good source of protein. I too understand about not being bothered as I feel like that too most days. I am going to go and buy some vitamins etc... In liquid at health shop to help my nutrition. An operation will be last resort from what I can gather from Dr but seeing him next month. I do not think they are keen on this or Botox. What medication have you used?

Janine

Hi Janine,

No, I have not had a manometry, but I have read it is not very pleasant, so not looking forward to that. I got a poor gag reflex so hope I don't need it. I am waiting for a Barium Swallow which my Dr put as urgent that was nearly 8 weeks ago but still waiting.

I had an Endoscopy 4 months ago and they found H Pylori, inflammation and a mild Hiatus Hernia, which I have had for years. I had a course of 2 lots of antibiotics for the H Pylori but don't know if this worked or not.

The only medication I am on is, Lansoprazole for my Hernia and Thyroxine for Hypothyroid.

Are you on any medication for your throat? I don't know how you cope with having this problem for such a long time. Have you lost weight? I noticed you are going to the meeting which is soon, It should be interesting.

Merryl

Hi Meryl

The manometry is not pleasant but it helps in diagnosis. Are you going to the meeting on Thursday?

Yeh, I am coping with difficulty but have good days and bad days

I was prescribed various meds but none agreed with me so currently on nothing.

Janine

Hi, Janine,

I am not going to the meeting, I live in South Wales, so too far for me. I hope you find out more about your condition in the meeting!

Merryl

Let me give an update