Achalasia diagnosis: Conflicting Manometry Results!

Achalasia
#1

I CANNOT [shouting] seem to get a straight answer or confirmed diagnosis:

  1. Three (3) barium swallows in last 4 years - all show ‘birds beak’ consistently

  2. Also a very recent ‘timed barium swallow’ (1,2,5 min) fluoro and after TEN minutes my esophagus still not emptied

  3. TWO (2) manometry tests by 2 different hospitals; one High Resolution one shows aperistalsis with relaxed LES pressure at 64 mm Hg; the other shows swallow contractions, but high LES pressure (46 mm). First technician says definitely achalasia …and second says “definitely not achalasia; what you have is Hypertensive LES”. Sheesh - conflicting results!

  4. EGD shows only inflammation, but no food retention.

  5. CT Scan shows mucosal thickening of esophagus but nothing else.

So, one GI guy, one lap surgeon, and one motilty doctor cannot make a diagnosis after all these data.

I have intermittent dysphagia for both liquids and solids. Liquids seem worse (cold Coke or cold water are the worst unless drinking with food). Have heartburn at night and have had chest pains occasionally. Also have awakened occasionally with some crazy coughing fits that seem to related to regurg, but I don’t have spontaneous regurg unless I drink to fast or eat too fast.

So…do any of you have any of this in common, or do you have a clue what is going on? I’m supposed to see another motility specialist Jan. 3, but so far, nobody seems to know what’s happening with me.

Thanks.

1 Like
#2

Symptoms and test results sound like it could be A.Where are you located? You really need to find a specialist for this!! Let us know where you are so we can help you get with a specialist and get your testing done to get a diagnosis.

Tonia

#3

I agree with Tonia, you need to go to a very qualified motility specialist to get an accurate diagnosis. It sounds like your case is one of the more complicated ones (aren’t you lucky). My husband’s was also more complicated, but fortunately it only took 2 years to get an accurate diagnosis for him (after he lost about 60 lbs.). We ended up going to the Cleveland Clinic and I would trust their opinion as far as diagnosis. Not everyone’s case has the “classic” signs and some motility disorders can evolve over time. For example, my husband has DES, which they say can develop into Achalasia. He also has had thickened esophagus wall show on his CT scans, but no bird’s beak. Good luck to you!

Brenda

#4

Hi - I can only tell you from my experience, which is lenghty. However, my chest pains were diagnosed as esophageal spasms & “treated” with nitroglycerin tabs. However, I have had 2 botox injections thru the esophageal dilation route and they have helped greatly - for about 6mos. each. I am getting symptoms again, particularly since I had a very cold ice cream bar last nite! Took two nitros and just have an aching chest now. I hesitate to call the dr. because of the holidays, but I know I will be going back for another botox tx.

Hope this answers some of your questions. Also, I have been dx’d with a lazy stomach emptying by manomatry and swallows over the past 10 yrs.

Sincerely,

Ruthlee

#5

yes my gi dr told me i have a rare disease called accalasia look it up all your sing will be there only 2000 in us has it plus i have lazy stomah to make things worse i have to have surgery i have same signs as u do

#6

Sounds like, feels like & looks like early stage Alchasia to me. Most doctors / specialists cannot diagnose it. Suggest you find a gastro that specialises in it. I’m in Australia, so not much help to you. There are only 2 experts in this condition in Sydney, Australia…The best is Professor Michael Cox in Penrith