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Brie (@brie87144)

Esophagus issues

Digestive Health | Last Active: Sep 19, 2019 | Replies (100)

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@brie87144

I’ve been going to mayo every month since December 2015 trying to find out what my body is freaking out about. This was just a side issue caused by whatever is going on that mayo hasn’t figured out. I’m usually pretty on top of everything and have no problem finding meaning but GI has me confused lol. I have 4 more tests in April. I have no idea what one of them is or how it’s even done cause I can’t find anything. All I know it’s going to be a long week with lots of tubes down my throat.

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@brie87144 thanks for providing a bit more information about your situation. It does sound complicated. I’ve had a lot of GI problems, as well as swallowing problems and I know that the tests aren’t very pleasant. As it turned out for me, my swallowing problems were due to a paralyzed vocal cord and it wasn’t related to motility issues as yours are. Do you know the names of the tests that are upcoming? If so, list them for us and maybe we can find some information to put your mind at ease. Teresa

I know what the video barium test is (well I assume it’s the same thing as the X-ray version but video instead) and the endoscopy and biopsy. There’s one called neuro speech assessment and I haven’t looked for this one yet but it’s called the esophageal manometry.

@brie87144 Ok here is some info that might help with your questions. The first website is about the neuro speech assessment, https://www.ncbi.nlm.nih.gov/pubmed/23409616. I’ve had this type of assessment as a result of a Parkinson’s diagnosis. Do you have other neurological symptoms? From my experience this involves meeting with a speech therapist and they will listen to you talk, measure your volume and other aspects of your speech.
Here is the esophageal manometry information, this is from Mayo’s website:
http://www.mayoclinic.org/tests-procedures/esophageal-manometry/basics/definition/prc-20014211
Hopefully, this info will give you some idea of what to expect. Teresa

Yes actually a lot. I lose complete feeling in my arms and legs. Numbness and tingling. Balance. Cognitive issues. Weakness and migraines. They thought I had MS for a while but couldn’t find it so we moved on from that. I honestly think everything I’m dealing with has to do with my nerves. But neurologists I guess don’t have a name for it or can’t make it fit into one thing. I kinda think it’s my EDS but mayo doesn’t think so. I’m surprised they haven’t sent me for this before. What does it have to do with the esophagus issues? I found like 5 totally different things when I was looking it up so I’m glad you at least know what it was, haha. Thank you I’ll look at both of those.

Again thank you!

@brie87144 When I first began with neurological symptoms it was thought to be MS as well, turned out to be Parkinson’s. Keep reading and looking for answers, this seems difficult right now, but once you have a diagnosis and treatment plan it will seem manageable. Teresa

Sadly looking for over 3 year In total. I know I’ll find something one day. Eventually lol

@brie87144 I looked for many more years than that, neurological disorders are not easily diagnosed. Keep up your courage! Teresa

They are frustrating for sure.