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Old 02-07-2008, 09:23 AM   #1
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granolawife HB User
non-specific esophageal motility disorder diagnosis

Hello,
I would like to connect with anyone that has been given this diagnosis. My husband is suffering from dysphagia as a result of this condition and it is affecting him greatly. He is not able to eat solid foods and has lost 25 lbs. What it is doing to him psychologically though is the worst part. I want to be sure that I am exploring every available possible treatment option...any suggestions/comments/feedback/support would be VERY much appreciated!!

Specifics: He had a barium swallow, manometry, CT and MRI scans. There does not seem to be a "physical blockage" reason that he should have a problem, hence the diagnosis.

Diagnosis: hypotensive (too relaxed) LES combined with non-specific esophageal body motility disorder.

THANK YOU very much for your time and response....

 
Old 02-07-2008, 09:27 AM   #2
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granolawife HB User
Re: non-specific esophageal motility disorder diagnosis

Also...he has been on Nexium 2x per day 20MG each time for 2 years. We thought that this was treating acid reflux, which he was previously "diagnosed" with so he should allegedly be "fine", but it seems to be worsening, and particularly worsened horribly in the last 6 weeks. Endoscopy showed ZERO esophageal erosion. We are questioning whether this was brought on by acid reflux at all?? Why would this become worse if we have been treating the reflux which supposedly caused it?
Also, Neurological exams come up fine. This is his only symptom.

THANK YOU...

 
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Old 02-07-2008, 11:45 AM   #3
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HasLPRD HB User
Re: non-specific esophageal motility disorder diagnosis

Was he taking other medications besides the Nexium? There are quite a lot of medications that can cause motility disorders.

When you say neurological exams, did that include brain MRI?

The only input I have at this time is to try protein shakes to try to keep his weight up. There seem to be three classes of these:
1) Just protein (marketed at body builders)
2) Protein and carbs (marketed at the low-fat crowd).
3) Protein, carbs and fat (marketed at people trying to gain weight).

I have acid reflux problems myself and the oil they put in #3 would kill me so I use #2 to try to keep my weight up.

Mark.

 
Old 02-10-2008, 09:55 PM   #4
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Re: non-specific esophageal motility disorder diagnosis

Thanks for your response!
No, no other medications at all and yes, he also had a brain MRI and neck CT - both were normal.

What type of protein shakes would you recommend? He has been drinking Ensures - the high protein and weight gain versions - perhaps the weight gain versions contribute to the acid reflux?

Has your acid reflux ever caused any dysphagia issues? It seems odd to us that he developed dysphagia while taking nexium twice a day. One would think that nexium would "cure"/stop the acid reflux, thus he should not develop new nerve damage so suddenly. He has only been taking it for 2 years, but assume that the reflux was left untreated for quite a long time...

 
Old 02-15-2008, 01:59 PM   #5
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justfinewg HB User
Re: non-specific esophageal motility disorder diagnosis

What kind of dysphagia does he have? What are his specific symptoms of dysphagia? I am sorry he is experiencing this.

 
Old 03-10-2008, 08:52 PM   #6
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Re: non-specific esophageal motility disorder diagnosis

He has no trouble with liquids...only solid foods and even things like mashed potatoes are difficult to handle. Sometimes it appears that it is getting "better", then he will relapse and it will be bad again for many days. When he is "better", he can eat a small piece of (soft) fish for example, although it may take him an hour or longer.

We are truly at a loss as to what may have caused this and how to potentially treat it. We have seen 2 gastro Drs. and a neurologist and this is the diagnosis we were given. They cannot give us an underlying reason for why this is happening. It appears to be "non-specific".

I would love to find others that have been diagnosed with this and get feedback as to what treatments have been attempted and if any progress has been made (or not) over any period of time. It seems we are at the beginning of this debilitating problem without much hope for recovery in sight. There is not an "easy fix", so to speak.

Thank you to everyone who takes the time to read this...and for your kind words.

 
Old 04-06-2008, 08:28 PM   #7
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Re: non-specific esophageal motility disorder diagnosis

I figured I would post an update...

My husband is doing better. He has been going to physical therapy once a week to "learn to swallow" again. The theory is that his esophageal spasm/dysmotility caused his brain to shut off his swallowing function in an effort to "protect" his airway -- ie, his brain thought that he was going to choke, so it stopped letting him

He still suffers from esophageal issues and dysmotility, but it seems the therapy has helped his brain start firing correctly again and allowing him to swallow. He is very slowly improving and we're not sure if he'll get back to where he was when he was totally healthy, but he's shown good improvement.

I hope this can be helpful to someone that may be suffering from something similar...
Good health to all!

 
Old 08-27-2008, 10:01 AM   #8
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kandy68 HB User
Re: non-specific esophageal motility disorder diagnosis

Quote:
Originally Posted by granolawife View Post
He has no trouble with liquids...only solid foods and even things like mashed potatoes are difficult to handle. Sometimes it appears that it is getting "better", then he will relapse and it will be bad again for many days. When he is "better", he can eat a small piece of (soft) fish for example, although it may take him an hour or longer.

We are truly at a loss as to what may have caused this and how to potentially treat it. We have seen 2 gastro Drs. and a neurologist and this is the diagnosis we were given. They cannot give us an underlying reason for why this is happening. It appears to be "non-specific".

I would love to find others that have been diagnosed with this and get feedback as to what treatments have been attempted and if any progress has been made (or not) over any period of time. It seems we are at the beginning of this debilitating problem without much hope for recovery in sight. There is not an "easy fix", so to speak.

Thank you to everyone who takes the time to read this...and for your kind words.

 
Old 08-27-2008, 10:05 AM   #9
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kandy68 HB User
Re: non-specific esophageal motility disorder diagnosis

I have just been diagnosed with the same thing. I have had a lot of mucous in my throat for about two years, following gallbladder surgery. I had an esophogeal manometry and barium swallowning test from which my doctor diagnosed it as non-specific motility disorder. The 24 hour PH probe showed no acid reflux. My doctor is prescribing reglan for two weeks and then he'll reevaluate. I am praying it will help with the mucous and swallowing problems.

 
Old 02-15-2010, 05:31 PM   #10
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mkgolfer HB User
Re: non-specific esophageal motility disorder diagnosis

Kandy68,
Did your swallowing ever get better?! I have been going thru this for 3 months. It started with Bronchitus, couldn't swallow, and now cold is gone, and I still can't swallow. I'ts gotten alittle better but doughy foods that bunch together always get stuck. but I can swallow anything if I drink water to get it down. I've been to the ENT, did the barium swallow, did the GI upper endoscopy, and all are normal!?!?
MKGolfer

 
Old 12-05-2010, 04:49 PM   #11
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cagirl44 HB User
Re: non-specific esophageal motility disorder diagnosis

Quote:
Originally Posted by granolawife View Post
Hello,
I would like to connect with anyone that has been given this diagnosis. My husband is suffering from dysphagia as a result of this condition and it is affecting him greatly. He is not able to eat solid foods and has lost 25 lbs. What it is doing to him psychologically though is the worst part. I want to be sure that I am exploring every available possible treatment option...any suggestions/comments/feedback/support would be VERY much appreciated!!

Specifics: He had a barium swallow, manometry, CT and MRI scans. There does not seem to be a "physical blockage" reason that he should have a problem, hence the diagnosis.

Diagnosis: hypotensive (too relaxed) LES combined with non-specific esophageal body motility disorder.

THANK YOU very much for your time and response....
I have been going through the same thing. Going in for the same test as your husband tomorow. But I noticed he has not been checked for H-pylori. That can be done with a poke of the finger. It is a bad bacterial infection. Treated with antibiotics and takes a long time to get rid of. That could be one of the problems, and did they stretch his throat. That will help to. sometimes have to have it done more than once. I had mine stretched and need it done again. Hopethis has helped a little. I have to drink alot of protein drinks and very soft foods. sometimes can't even get that down. Good luck to you.

Last edited by cagirl44; 12-05-2010 at 04:51 PM.

 
Old 12-13-2010, 06:34 PM   #12
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MTdabs HB User
Re: non-specific esophageal motility disorder diagnosis

Quote:
Originally Posted by granolawife View Post
Hello,
I would like to connect with anyone that has been given this diagnosis. My husband is suffering from dysphagia as a result of this condition and it is affecting him greatly. He is not able to eat solid foods and has lost 25 lbs. What it is doing to him psychologically though is the worst part. I want to be sure that I am exploring every available possible treatment option...any suggestions/comments/feedback/support would be VERY much appreciated!!

Specifics: He had a barium swallow, manometry, CT and MRI scans. There does not seem to be a "physical blockage" reason that he should have a problem, hence the diagnosis.

Diagnosis: hypotensive (too relaxed) LES combined with non-specific esophageal body motility disorder.

THANK YOU very much for your time and response....


Hi - This sounds very similar to my situation but I have not heard of that specific diagnosis. I have also been through the barium swallow, scans, etc. to no avail. Sorry that I can;t offer any suggestions but I sure appreciate this lead. I will look into it.

 
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