"Suffering the Slings and Arrows of Outrageous Fortune"

Test Results

We have not heard from the doctors involved, but I do have the reports from Em’s MRI and gastric emptying test…

Brain MRI – as expected, all is normal. I am going to have my husband get a CD of the actual images, so we can compare this MRI to the last one. Still no explanation of what is causing Em’s weird eye thing but I suppose I will give the opthamologist a call and make an appointment to see him now that we have the MRI results. I am glad to know that it is nothing serious (like a tumor) but it is kind of annoying to have to spend time and money to rule out things that are so unlikely only to likely eventually come back to the original thought that it is autonomic related. She is having (increasing ?) trouble with accommodation and focusing, which may or may not be related. She continues to experience this dilation thing (her pupils dilate and stay dilated for periods of time – a few minutes to an hour or more).  When her eyes are doing this, and we shine a bright light in them, it appears that her pupils are trying to contract. They contract slightly then dilate again. Sometimes continuing to shine the light at her eye will cause the pupil to eventually contract, sometimes it does not.

Gastric Empyting Study – at one hour, her gastric emptying was 21%. According to the report, that is ‘diminished from the normal value of greater than 50%’. At 4 hours, her gastric emptying was 100%. So, delayed in the first portion of the test and complete by the end.

I am a little confused, because the normal percentages I found online don’t really line up with this but (having thought about it for a day or so) I think the difference is Em’s test was with oatmeal and most of the info online is based on the eggs and toast meal. I vaguely remember seeing the different values for the different meals but cannot seem to find them at the moment.

Beyond that, I have no way of predicting what the doctor will say about the delayed emptying at 1 hour (if indeed he views it as delayed) and the 100% emptying at  4 hours. I am expecting a letter and a phone call by the end of the week, according to our past experiences with this doc so presumably I will know more then. I am glad I can have the report in front of me because I will be able to understand whatever he tells me better than I would have without it.

In a sense I guess it won’t matter, because he did tell us that he would treat her symptoms regardless of what the test showed, so I guess I can just wait and see what he says about it. Also, one of the most important things to keep in mind is that this is a snap shot of her overall gastric function. She is in a pretty decent spot right now – her constipation is controlled, she is taking in enough calories and eating a decent amount most of the time, and she knows what foods trigger her symptoms and avoids them. So, this test certainly didn’t take place when she was at her worst. And, these symptoms come and go – it can be ok one day and really not ok the next. Which is pretty much where she is, although for her it is more that she is only sort of ok one day and worse the next – these symptoms are always a problem.

All I can do now is wait to hear from the doctor and see what he wants to do.

 

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Comments on: "Test Results" (5)

  1. Karen said:

    I had the same results with my gastric emptying test. In my case, they felt that the delay in the first hour was from the medications I was taking for my IBS. Eventually I had a hydrogen breath test which showed I had small bowel bacterial overgrowth. My daughter also had a gastric emptying test and she was diagnosed with gastroparesis. Has Em been diagnosed with dysautonomia? It seems to go hand in hand with EDS.

    • Em definitely has autonomic dysfunction – she failed her tilt table test in 8 minutes and has many, many symptoms associated with it. My bet is on dysautonomia as a cause for her poor motility. Certainly, she has been on some meds that can exacerbate it, but she was doing all this before she was on meds and we have since adjusted her meds to try to lessen their impact. I think that has helped, but these symptoms ebb and flow – right now she is in a decent place, the weight loss has stopped and she has gained a little back. But, much of her gain is because she has learned how to eat in such a way that hurts the least. How she eats and feels is not normal but it is easy to forget that because it is normal for her. Her doctor says he will treat her symptoms so my fingers are crossed!

  2. Each place that does the study have a different “normal” range. So it’s hard to tell on line and by asking others. The Dr should give you your results which will include the “normal” range. Also I have found that some people have done the actual test different than mine.

    Like you said the different foods as we’ll as the time if the actual test will never give us results to ever compare. Here in WA state our full test is two hours. I was told many times I could leave after 30min, if I needed to and that would be enough for the results. I stayed the full two hours. My new GI Dr is having problems with them to actually perform the full four hours. She came from NY, where it is there standard. I agree. We could speed up or even slow down more towards the end of the test. It is not accurate and the GP community needs something better!

    Good luck.

    • Thanks so much for chiming in…I really do feel out of my depth here, especially since the GI doc has since called and said the test was normal. (I swear, if I didn’t have the sense to get her reports for myself I would have no idea of the actual results of any of her tests.) I mean, I guess that is what I was wondering about – whether having one portion of the test indicate delayed emptying, but having full emptying by the end meant anything or if it is normal. (Seemed a little abnormal to me, but what do I know? And it, like you said, the test isn’t very accurate to begin with so, what is the point?)

      It was just a little disappointing to hear that, in his view, the test was normal. Kind of a bummer. Ultimately, I guess it doesn’t matter, because he says he will treat her symptoms regardless of the test, so I am thankful for that. He has offered her Buspar, but I am a little concerned and have decided to wait at least until we see him in July and can discuss the pros and cons. Do you know anything about Buspar as a gp treatment? I have never been completely comfortable with him – I just don’t know that he knows enough about EDS to properly treat her but now I am wondering about his actual motility expertise. I guess I am just still wishing we could go back to the GI doc at Cincinnati that we really, really liked.

      I am just feeling really annoyed and grumpy about the whole thing, tbh – I wish there was an easier path through this, but, I know there isn’t. I do appreciate your commenting – it is so nice to know we are not alone!

      • I just googled Buspar and it seems to be an anxiety medication. This is common. My GI Dr tired those (not that particular one) as well as anitdepressents. The theory is to ‘relax’ you and therefore the stomach will relax as well. It didn’t work for me. I had problems with each drug (side effects). Maybe she will respond well.

        If you don’t like him, is there another in the area? I got rid of my first GI Dr as she just didn’t understand me or maybe it was the lack of communication. Either way, I found a new one and just love this new gal. Even if she could not help me.

        My test was for 2 hours with an egg salad sandwich and a cup of water. I laid down for the full 2 hours. Then there was a 30 min session right after with Reglan. I almost didn’t make that one. Once injected I had mass cramping, itching and it felt like the room was spinning. This was a low does. In the end my results were that I would fully process that ‘meal’ in 4 hours as a regular person is 60 – 90 min. Who knows what the time would be if I was able to go for a full 4 hour test.

        If you ever want to just chat, I am mostly on Facebook. My blog has a link, that is if you are on there. I would be happy to help any time I can!

        Best of luck to you!!

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