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My esophageal story


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#1 mando621

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Posted 27 January 2009 - 04:57 AM

Hi,
I recently went through a thorough evaluation of my swallowing issues. Here is a recap.

Barrium swallow showed slight impairment in holding liquids in my mouth before triggering the swallow. One episode of laryngeal penetration on swallow of thin liquid. Swallow triggered low and late for my age. Epiglottic inversion sluggish and not complete. Swallowing solids was piecemeal, chewing was slow and slight delay in passage of food down the esophagus.

Then on to manometry. Residual pressure point is 3.4 with percent relaxation 149.9% (no idea what this means). Resting pressure is low at 6.1 which is consistent with a poorly functioning lower esophageal sphincter. Esophageal peristalsis was marked by significant dropped wave forms. Rare normal peristalsis that is less than 10% and significant hypoperistalsis. If I swallow too fast (less than minute apart) does not propagate paristaltic wave forms. when I do get a wave form, it is generally hypotensive. This suggests significant esophageal dysfunction.

Endoscopy. Summary: esophagus appeared inflamed. Biopsy showed reflux esophagitis, chronic inflammation and occasional eosinophil. Pathologist did not give the diagnosis of eosinophilia. Diverticulum found in the fundus. Lab report says: focal basaloid cell proliferation and mild chronic inflammation including occasional eosinophils. Changes are mild and focal and are consistent with relux esophagitis.

Bravo test (pH): Numerous heartburn episodes documented, but no evidence of acid. No nocturnal reflux. DeMeester score 5.5 day one and 6.2 day two. There is no evidence to suggest that this patient has symptoms secondary to gastroesophageal reflux disease.

So, my case is being reviewed by an expert at the university to see what they think and what should come next.

Any thoughts? Most of this is what I was expecting.

Mando.

#2 Jeannie McClelland

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Posted 27 January 2009 - 05:27 AM

Hi Mando,

Somebody is on the ball - that was a really good work-up.

Have you looked at the Esophagus page already?

From also reading GI posts on the Forum, it seems that the degree of involvement indicated by tests doesn't always correlate with how severely we, as patients, perceive our symptoms to be. There also seems to be a really wide range of approach to treating the problems. (Sounds like sclero in general, doesn't it?)

Hope they come up with a coordinated plan of treatment for you soon. Let us know how it goes, OK?
Jeannie McClelland
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#3 mando621

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Posted 27 January 2009 - 09:57 AM

Hi Jeannie,

What I'd like to know, is why he told me it couldn't be scleroderma or Sjogrens, when everything I've read about esophageal dysmotility lists scleroderma as one of the major causes. He doesn't really know all my symptoms, other than that I have Raynaud's because he hasn't asked. I haven't volunteered all my symptoms because he is a GI doctor.

I hope to hear back from the doctor soon, waiting is really hard.

I know I should probably go to the rheumatologist I currently have and show him all these tests, but I was hoping to hear what the specialist had to say first.

Mando.

#4 Cheryle

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Posted 27 January 2009 - 12:12 PM

Mando,

My GI doctor suspected that I had Scleroderma long before my rheumatologist figured it out. I first had the Barium Swallow, that didn't show much, but he did also order the Manometry and the 24 Hour PH tests that showed my GERD and Dysmotility. I would mention the other Sclero symptoms to the doctor.

Good idea to see your rheumatolgist with the test results.

Cheryle

#5 Jeannie McClelland

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Posted 27 January 2009 - 12:21 PM

Hi Mando,

I found it really curious that the GI doctor (is that right) told you it couldn't be scleroderma. Can you ask him why he said that?

Some doctors are great at taking/getting a history and really pay attention to seemingly unrelated things, and some are just plain lousy.

It was having a whole group of symptoms, backed up by tests, consistent with scleroderma that got me diagnosed, and at that, I think I'd still be in limbo if I hadn't been lucky enough to get a rheumatologist who not only specialized in sclero, but also is familiar with the 'sine' form.

Did the specialist give you any idea when you might hear back?

Fingers crossed!
Jeannie McClelland
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#6 Amanda Thorpe

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Posted 27 January 2009 - 01:11 PM

Hello Mando

I think Jeannie made a very pertinent point, why not sclero? On what basis is the doctor dismissing this, you have a collection of symptoms consistent with sclero. You need to make him give an account for his decision, clinical reasons why it's not sclero. "It just isn't," is not an answer.

I hope you get an answer soon.

Amanda
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#7 nan

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Posted 27 January 2009 - 01:34 PM

Wow! You have been through a lot of tests. I was supposed to have the manometry, impedance and 24hour swallow test done at Hopkins, but since it is out of network for my insurance they are refusing to pay. Now I need to wait until May to see a doctor locally. I am not real excited about these tests. How painful was it?

I hope that you get finally get some answers. I have Sjogren's and Scleroderma and they both definitely affect motility.

Take care,
Nan

#8 Jeannie McClelland

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Posted 27 January 2009 - 01:42 PM

Hi Nan,

None of those tests are painful, or at least I didn't find them so. They use a little local anesthetic when they pass the tube/probe through your nose and usually give you sips of water to swallow to help pass the tube down the esophagus. The tubes are very fine gauge, nothing like an endoscopy tube. Most people, myself included, find the gag reflex the biggest problem. With the 24-hr test, once the probe is in place, the thing you'll probably notice most is the tape on your face holding it in place.

Best wishes and warm hugs,
Jeannie McClelland
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#9 nan

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Posted 27 January 2009 - 03:07 PM

Thanks, that makes me feel better.
Nan

#10 debz

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Posted 27 January 2009 - 08:46 PM

Hi Mando,

I had the manometry testing, ph testing and endoscopy all in the last few months. I didn't get a report back like yours, infact the gi doctor told me the results. He had mentioned scleroderma to me twice before, but didn't mention it, saying the dismotility 'could' be from sjogren's, but it wasn't common for sjogrens. So I am a little confused. I am seeing him again in July and will discuss stretching the esophagus then. Nothing has changed and I still have all the symptoms I did (not just the swallowing + gi problems, but all the other symptoms) it is a little disconcerting when you don't know exactly what it is you are dealing with.

I can't understand why the gi doctor won't consider scleroderma or sjogrens considering your results. I think the fact that he is having it reviewed by an expert is a really good thing. Two heads are sometimes better than one and often experts see things that others don't. I wish you lots of good luck in your quest!

Hugs Debz

#11 mando621

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Posted 28 January 2009 - 02:30 AM

Thanks so much for all the replies.

Question about the pain of any of the tests... There really wasn't pain. The manometry test was uncomfortable. I had a hard time getting the "probe" for lack of better word down because my gag reflex is very strong. Once it was down it wasn't bad until it had come up as far as the upper esophageal sphincter and then I started getting dry heaves. Only able to get two swallows in at that height and they had to end the test early.

The Bravo test wasn't painful at first. They actually attached the device to my esophagus, so you couldn't even tell anything was going on. There wasn't any tube coming out the nose like it used to be. I wore a device that looked like a large pager which had to stay within 3 feet of me, so I could even shower. The only uncomfortable part of the Bravo test was when I ate. I thought it was just me having problems, then I figured out it was when the food passed the sensor, I would get pain almost stabbing for just a moment. It made it hard to eat like normal but I tried to eat as normally as possible so I would get good test results. Just about the time the test was to end, 48 hours for me, the pain subsided which might have been the sensor falling off my esophagus. Once that was over I was much better.

Of course some of it might have been the air left in my stomach after the endoscopy. They pump your stomach with air so they can see into it. They try to remove as much as possible, but I'm sure there is some left.

Actually, he said it couldn't be scleroderma because there wasn't any fibrosing of the esophagus. I guess he was expecting the esophagus to have a plastic like feel. From what I've read, inflammation and dysmotility come first and fibrosing comes much later in the progression of the disease. Once again, a doctor that expects all aspects of the disease like skin fibrosing before making a diagnosis.

I looked up the doctor my GI is consulting with, and he is the head of the GI department at the University of Wisconsin Madison. They have a GI specialist that is in charge of a dysphagia clinic and specializes in motility disorders. So I may have to wait for the department head to refer my case to him. No word from anyone so far.

Sorry to make this incredibly long, but last night my husband saw an ad on TV about a class action lawsuit against the MRI contrast used. I guess it causes people with kidney problems to develop symptoms that resemble scleroderma symptoms. I had an MRI about 11 years ago with the contrast that is in the lawsuit. Only I don't have all the other symptoms of this disorder, and usually the symptoms start happening a few months after the MRI.

Mando.

#12 Shelley Ensz

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Posted 28 January 2009 - 03:15 AM

Hi Mando,

I believe you are referring to nephrogenic systemic fibrosis (NSF) or nephrogenic fibrosing dermopathy (NFD), which is caused when people with end stage kidney disease (usually those on dialysis) are given gadolinium contrast with an MRI. Some doctors think it should actually be called dialysis-associated systemic fibrosis.

It is a scleroderma-like illness. There are many illnesses quite similar to scleroderma. But I believe (please correct me if I'm wrong, I often am!) it is NSF/NFD (not scleroderma itself) that is involved with the MRI contrast lawsuit.


Warm Hugs,

Shelley Ensz
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#13 mando621

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Posted 28 January 2009 - 03:43 AM

Shelley,
Yes that is the issue with the law suit. I read the information available about that disorder, NSF/NFD, and I don't fit into that.