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.