I'm in Limboland and having trouble swallowing: takes 3x to get pills down; foods go up into the back of my sinuses sometimes; chunky foods sometimes get stuck high in my chest and it hurts. It could be due to dry mouth from my pee meds, says my dentist, but she also recommends getting it checked by an M.D.
My PCP referred me for an Upper Endoscopy, but I haven't seen that as a test for dysphagia in any MS forum. It seems more relevant to get a barium swallow or speech pathology assessment. I've had so many tests lately, and spent so much time at the clinic, that I'd like to avoid this if it's not necessary.
I'm no expert, but I know lots of people on the forum, including myself, have had endoscopies done. Like you, I'm a bit surprised that they are not also doing a barium swallow, perhaps you could ask why not?
The endoscopy can look for any physical reasons for your swallowing problems. If they find erosion (like from stomach acid reflux) then that could explain the swallowing problems. If your anatomy is normal, then that is more indicative that your swallowing problems are neurological.
For me the procedure was not difficult to endure, I was on lots of medication and very relaxed and don't remember the actual scope. I do think it can help to shed light on your problems, and I'm sure you'll get more responses assuring you, since again, I know several of the forum members have had this test done.
We haven't "met,' so hiya! I hope you are enjoying being one of our members. It's a great place, for lots of reasons.
I've had swallowing difficulties or at least, esophageal difficulties, in the recent past. Actually, over most of the summer and early fall. My PCP has referred me to a swallowing center, which is a multi-disciplined place that evaluates all kinds of problems in the mouth, throat and esophagus. The lead person there seems to be a speech pathologist, which strikes me as odd, considering that it's instantly apparent if someone is having trouble with speech. However, there are MDs to perform any further tests as indicated.
I confess I haven't followed up on this. My swallowing stuff has abated for the most part, and meanwhile I've had to concentrate on uro issues, big time. I'm also having ringing in the ears, which I devoutly hope is simply part of a sinus flare-up which is brewing.
Anyway, I do understand about too many doctors and too many tests. Calgon, take me away!
But my advice is to find a swallowing center at a large hopsital, particularly one part of a university system. You are much more likely to get a comprehensive evaluation quickly if you choose that route. Google the hospitals in your area for quick access to this info.
I've just read your journal entries, and holy moley, many folks here can relate! It is ALWAYS a mistake, even for someone with a PhD, to act knowledgeable around the vast majority of neuros we have known. I know you were only trying to breeze by the preliminaries so the doctor would have more time to cut to the chase, but sad to say, it doesn't work that way. Many a thread has been written on the care and handling of neuros. They are a breed apart.
Before I read your journals I had just answered Lori's post by advising her not to act too knowledgeable at an upcoming appt. I hope she sees this as reinforcement.
Well, for you I can only encourage you to keep at it, always maintaining that pleasantly intelligent but slightly deferential demeanor. Hard to do sometimes, but necessary for the prize.
Ess has answered your question with her experience with this problem and she knows her stuff!! I know others who have dealt with this problems recently too, they will pop in here and help you out too.
I'm gonna go read your journals so I can get to know you better. I'm glad you found our forum family, I think it's the most wonderful place in the world. The people here are the best and most supportive I've ever known.
Good luck with the tests for you swallowing and have a Merry Christmas.
I have difficulty swallowing. It happens everyday bit not every time, This past Tuesday I had an upper GI with the barium swallow. It was not my neuro who ordered it. It was my GP. His remark was these are things Dr. A should be doing. I said if I waited on him I would never get anything done. I just an MRI of the spine today, ordered by my neuro who wrote out the RX and then wrote on it...patient will schedule. Not one Dr. that I have ever seen had the patient schedule their tests.
Sounds like I should definitely do the endoscopy and ask about more tests. The physical therapist who's assessing my vertigo for the neuro is on the ball, and wanted to know EVERYTHING I was experiencing so she can assess it all. I'll ask her about the barium swallow, since Speech Pathology is in her area.
Thanks for the advice, but if I go to a university hospital swallowing center, it will be out of pocket and right now I don't know about my employment future, so I'm saving saving saving.
One of my sisters is an occupational therapist and she says, Speech Pathology is the specialty that handles swallowing issues since both are neurologically complex functions of the throat & tongue. One tip she gave me was to try to notice if one side of my throat is worse. Then sit up straight, take a mouthful, chew well, and turn my head to the WORSE side. That really helps me -- maybe it will help Ess and Terry, too. At least until you have time to follow up with a swallowing expert.
I don't know if it's better to post one long thing with multiple topics or three short things the same day. Please let me know since you clearly are experienced here.
How do I find those threads?
BTW, I've read that sickle cell patients also have trouble when they appear knowledgeable about their medications and condition. On top of the usual MD status issue, they have to cope with racism as well -- why would a young black person know so much about painkillers unless he or she was a drug addict?
Makes me feel grateful to have "only" MS. And to be white.
Octarine - I went through the whole battery of swallowing tests and can talk to you about all of them. They each show something different. Here are two recent threads where we discussed the topic.
Please read the whole thread. My experience with manometry (which also was the one which gave me my answers) was abnormal due to the septal deviation I had. I do npot believe other people find it a bad test at all.
You are correct that a speech language pathologist is the one that does evaluate and treats dysphagia. It is a team approach and a GI doc is part of that team. An MBS would be appropriate but it gives you only part of the story FEES might also be a test that would be useful. It sounds like you are having some reflux so GI should consult.
I tried to find it, but will have to look again tomorrow. Perhaps others can help. It was written by a member named Amy, but I don't remember her nickname. the title of the thread was something like "the care and handling of neurologists." I don't have a copy of it anywhere.
You are spot on as to the discussion topic. If someone could remember Amy's nickname, then we could search This Community for it.
Quix is referring to Amyloo (Amy), and her post on neurologists. This has been discussed many other times, maybe more than any other subject, and often comes up in some other context so it isn't the title of the thread.
However, Amy's thread is post #391579
A few others on this topic are
Just fill in one of these, after show/ at the top of the screen. Not everyone is familiar with URLs, but this is pretty easy.
For other searches, go to the box labeled Search This Community. For this I used search terms Care, Handling, etc. If anyone has tried this and has gotten far too many matches, try filling in more search terms, any names you remember, etc.
If a topic is particularly important to you, use your Web brower's Favorites, or Bookmarks, or whatever it's called, to mark the thread. That way it will be instantly available to you.
Thought I'd take this opportunity to comment on searching, since a lot of members want to do that.
Hi me again. Still scrolling through old posts and I guess we have a lot in common.
I have had all of the swallow tests and everyone seems to have already given great advice on which is best and some threads to read etc. but unless I missed it I didn't see any advice on helping you gag those pills down in the mean time.
My most recent test was the barium swallow with speech pathology and yes there are problems. Like you it takes as much as 5 tries to swallow. They helped me learn foods to take my meds with. For me the best is apple sauce. We tried fruit cups, pudding, apple sauce and some other goo but for me the answer is apple sauce.
Water or any liquid is not thick enough to move the pills down and some of the other is way too thick. Maybe you could try a few and see if it works for you. It can't hurt because even if they diagnose a problem you will still need a way to swallow pills.
Good luck - I hope you get answers and maybe one of those will make it easier.
No problem - happy to share. I hope that it helped (even a little). Sometimes the practical advice is more important to me then the medical reasons stuff. Just tell me how to make it easier or better. It's not like they can make us all better right, so I like it when they spend time making me suffer less.
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