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Manometry and PH tests


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#1 debz

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Posted 04 December 2008 - 11:12 PM

Hi everyone,

Well, I had the manometry (I hope that is the right spelling) and ph test. The first part with the water was okay and everything looked 'normal'. When I had a small piece of bread the results became abnormal (5 out of 5 times) and the technician was a bit shocked. She said she hadn't had a reading like mine yet! I too was a bit shocked, as I thought because everything went well when I was swallowing the water, that it meant everything was okay,. The 24 hour ph test showed that I have reflux (I have been on nexium now for almost 3 years), so there wasn't anything unusual there, but all these results now go to my gastroenterologist. I don't see him until the 16th January and the wait is going to be the hardest.

He has mentioned scleroderma to me the two times I have seen him and he was the one that suspected motility problems. I am not sure what this is going to mean for me? Does the motility problems remain as they are? Do they get worse? I know you don't have the crystal ball I am looking for, but because I don't have a diagnosis of scleroderma, just suspected....does this now mean that it is scleroderma? Or could Sjogren's syndrome affect motility too? January the 16th is a very long way away for me right at the moment.

Hugs to you all,

Debz

#2 mando621

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Posted 05 December 2008 - 04:16 AM

Hi Debz,
I'm in a similar boat to you. I'm trying to figure out what is wrong. I've been having trouble swallowing for about 5 years. I finally had an endoscopy, showed GERD. I also had a swallow study with the barrium, only trouble was the food that they had me eat didn't seem to cause too much trouble. It can be different at times, but usually it is small pieces that cause trouble like crumbled hamburger, spaghetti noodles. I see the gastro. doctor today and possible manometry and ph also.

Did you have a swallow study? Did it show anything? Mine showed only a slight delay in emptying the lower esophagus. I get a feeling something is stuck higher up, and at times it seems to get clogged in my vocal chord area, which didn't show up in the swallow study.

Do you eat something during the manometry test? I guess you have to swallow something to see how the muscles are working.

I also suspect Sjogren's which does cause motility issues with swallowing. I'd like to get treated for the problem, regardless of what is causing it. It is hard not being able to talk right, and swallowing can get scary when things get stuck.

I hope you get answers. If you do, post it here.

Have a good day.

Mando.

#3 Kamlesh

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Posted 05 December 2008 - 06:56 AM

Hi Debz,

I have gone through manometry test several times, but never bread swallow test. I go through following four tests twice a year and the conclusions are I have no flexibility in my esophagus (food passes through esophagus by gravity) and my acid reflux is better after Toupet (partial) Fundoplication:

PH probe test: measures acid reflux. It measures severity and occurrences for a 24 hour period. I have gone through the test with and without acid reflux medications and it proved my acid reflux medicine is working fine and I will be better off increasing dose of my acid reflux medication

Esophagus manometry test: Although painful, but is very useful in diagnosing motility of esophagus. Also, it gives the view of functionality of valve between esophagus and stomach (LES)

Barium Swallow test: Complements Esophagus manometry test to measure how food passes through esophagus and is there a backflow of food. If food is passing too slowly you have major issues with Achalasia.

Gastric emptying test: Time required for your stomach to empty

Take care!
Kind regards,

Kamlesh


#4 debz

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Posted 05 December 2008 - 02:43 PM

Hi Mando and Kamlesh,

The test that I had was to assess the peristalsis of the esophagus. They put a tube (rather large!) down my nose and into my esophagus and then had me lie on my right side while I sipped small amounts of water at various intervals. Then I sat up and did the same. It was all visible in graphic colours on a big computer screen. Then I was given small pieces of bread to chew and then swallow at various intervals. This is where the problems were clearly visible on the screen. My esophagus did not propel the food down to my stomach and I felt as though I needed to drink water (which I had to do to get it to go down) to get it down. The screen showed no visible colours half way down my esophagus. She (the technician) said that it should have shown colours all the way down to the stomach sphincter....which also was not behaving in a 'normal' response to having food in the esophagus.

This test lasted for about 1/2 hour or so and then they put the wire down for the ph testing. I was told in the information that was sent to me that I would have to swallow small pieces of bread....maybe they do the tests differently here (Adelaide, Australia) to the USA.

My gastroenterologist has not ordered any barium swallow test for me, I have just had the endoscopy followed with these manometry and ph tests. I really don't know what the results will be, as the technician said my doctor will explain what these results are and what they mean.....I am just not good at waiting hahaha!!

The tests themselves although uncomfortable and very wierd feeling, were tolerable. I don't think I would like to have them done again though!

I think with all my other symptoms, raynaud's, joint pain, muscle pain, swollen fingers and legs, from the knee down - sjogren's syndrome, GERD and now the motility problems, hopefully they can sort things out and give me some answers. My old specialist (who has now retired) said that my sjogren's was secondary to something...problem is my ana which I found out went up to 1:640 homogenous has not given any indication via ENA as to what autoimmune problem I have. I have not tested positive for scleroderma, although he tested me numerous times for it.

Sorry for the novel again! Hope everyone is keeping warm.

Hugs Deb

#5 mando621

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Posted 08 December 2008 - 04:54 AM

Hi back to you Debz,

I talked with the Dr. and he isn't going to have me eat anything during the manometry test because is going to sedate me for a second endoscopy and placement of the PH test following the swallowing. I'll only get to swallow water, so I hope it actually shows true results with that.

I have nearly the same type of situation as you. I have a slightly positive ANA, but all other tests come up negative in blood work. I feel I definitely have Sjogren's, whether primary or secondary I don't know. I have Raynaud's and it is getting worse. It got so bad during a blood draw the other day, that it took 6 attempts to get blood. My fingers are swollen most mornings and the skin on the last part of the fingers is shiny. I have enlarged nailfold capillaries. I have burning mouth issues, dry everywhere, and the feathering wrinkles around my mouth.

I'm not aggressively fighting for a diagnosis anymore. I've decided that I for the most part am feeling okay, and if the doctors don't think I have scleroderma, then that is how I'm going to proceed. I've been criticized by someone at a support group for fighting to get a diagnosis when I haven't worked through the chain of command in the doctor arena. The rheumatologist I've seen has said that while I have some symptoms of scleroderma, and I might develop it some day, that I don't have it right now because I'm not getting skin thickening.

I'm getting the swallowing issue looked into. The GI internal medicine doctor seems open to investigating this thoroughly. He did say that we are in the process of eliminating non-rheumatic causes for my problems. That is good. I'd love it to be something else.

My primary care doctor wanted me to possibly get an MRI to figure out why I'm having trouble swallowing and talking. I said, I'd like to finish with the GI doctor before moving into other areas to test. She said that is fine, so I'll get back with her after the next couple tests are done. I've started medication for my elevated blood pressure, and it seems to be working.

I'm going to go into a wait and see mode at this point. Another person here in my area with morphea told me I should be aggressive and get answers. The problem with that, I've tried with the doctors available to me through my insurance plan. At this point, I'd have to probably get a referral to someone outside the plan. I'm going to see if the current tests show anything and see what my primary care doctor has to say about it. I will be more passively aggressive with my primary care doctor to try to get answers, but I'm going to try to go through the proper order.

I wish you the best in your pursuit of answers.

Mando.

#6 janey

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Posted 08 December 2008 - 05:14 AM

Deb and Mando,
Sounds like you both are going through a full battery of tests. I know how frustrating it can be, but sometimes that's what it takes to get the correct diagnosis. I wish a simple blood test could provide a diagnosis, but with scleroderma that is not the case. The ANA simples tells you that you probably have an autoimmune disease, but it can't tell you which one. Some of the specific antibody testing can help, but since not all people with scleroderma have the scleroderma antibody, it's not a sure thing either. My bloodwork has never tested positive for scleroderma, but yet I definitely have it.

Just make sure that you are aware of all symptoms - new, recurring, and existing. Are things getting worse, better or the same. Deb, you asked if the motility problem gets better or worse - it depends. This disease is different for everyone. I start out with a motility problem and Dysphagia (swallowing problem), but both corrected themselves once I got started on medication. The dysphagia still comes and goes, but it's never been as bad as it was in the beginning.

Mando - in reference to the "skin thickening", that doesn't always happen. I don't have thick skin. There is a scleroderma sine scleroderma which is systemic sclerosis without skin involvement. You might ask your rheumatologist about that.

I hope all of your tests come back with results that provide more information about what's going on. Not knowing is frustrating, but at least you both have doctors that are trying to find answers. That's a good thing.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#7 debz

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Posted 08 December 2008 - 04:20 PM

Hi Mando,

It sounds as though we are in the same boat so to speak! I am sorry you haven't got an answer as to what is causing your problems. It is frustrating. I understand the not wanting a diagnosis of anything - but knowing what is happening and why can only help in the treatment of such and everything I have heard and read says early treatment is important. I am on plaquenil, nexium and norvasc for the raynaud's. I am sorry to hear that your raynaud's is getting worse.

My old specialist (who has now retired) thought that I had probable lupus, but the more things crop up and new symptoms appear (like the swollen fingers) it to me is more along the scleroderma side of things. Not everything that is happening to me can fit under the sjogren's umbrella, which can confuse me a bit, as I would love it not to be anything. I have been on this journey since 2002....so I am hoping that someone, somehow can piece this all together eventually and say to me this is what you have.

Good luck with your endoscopy....I am glad that your gastroenterologist is thoroughly investigating the causes of your problems. My gastroenterologist is similar in that he is thoroughly investigating my swallowing and reflux issues. Hopefully, in time, the pieces of the jigsaw may fit together....I hope so. So long as each symptom is treated, I can wait (even though I am not good at waiting hahaha :) ). When are you having the endoscopy Mando?

Take care,
Hugs Deb

#8 debz

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Posted 08 December 2008 - 04:26 PM

Hi Janey,

Thank you for your reply. You are right, it would be great if one test could provide all the answers to everything. It is frustrating, but at least it is being investigated. I have felt my swallowing problems becoming worse, or rather the feeling of having food stuck in my esophagus becoming worse. I have had reflux for about 3 years the swallowing problems for less than that.

Again thank you Janey for the links you provided. I expect I will just have to wait until January before I get any answers, or then again, the results may not be as abnormal as the technician thought they were.... and I have been thinking about it too much! Oh dear!

take care,
hugs Deb

#9 Kamlesh

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Posted 08 December 2008 - 05:30 PM

Debz,
The test you are describing is manometry test. Before my surgery as well as after my surgery, I went through the test followed by barium swallow test. But, this barium swallow test was customized for me and carried out by radiologist doctor himself to monitor how fluid is passing through my esophagus in various positions. I am blessed to University of California San Francisco (UCSF) near by. It is great place It is truly remarkable institution.
Kind regards,

Kamlesh


#10 debz

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Posted 09 December 2008 - 02:53 PM

Hi Kam

Yes it is the manometry test. I am glad to hear that your investigations were so thorough. Having doctors who don't give up and look at all possibilities, is important with these diseases.

Hope your esophageal problems continue to be kept at bay.

hugs,
Debz