I was just diagnosed with beginning swallowing disorder. It's not really bad at this point. I have to go to speech therapy to learn tips, exercises to strengthen muscles in throat, etc. Is this common with relapsing remitting MS? It's been hinted at that I've moved onto secondary progressive. Does anyone else have swallowing problems? (rum and coke reaaaally burns when it hits your lungs) LOL
Hi there. Yes, swallowing difficulites are very common with MS. You might want to do a search in the Search This Community box to find lots of discussions on this topic.
I've had swallowing problems myself off and on for the past 6 months or so. It can be excrutiatingly painful. I've put off doing anything about it (except consulting my PCP) because I have so much else going on, but a bout a few days ago has led me to call the Swallowing Center he is referring me to. In a couple of weeks I'm set for a swallowing test. Not sure what this consists of, as apparently there are several kinds.
I went for a swallow study. It was about 2 minutes long. Done by a speech therapist with a doctor present. They sit you in a chair and put a machine next to your throat and then feed you little bits of food and water with barium in it. The therapist told me it's not truly accurate because you are completely focused on what you are swallowing, which is one of the main things they tell you to do to help yourself....very small bites and sips and concentrate on swallowing. The test is absolutely no big deal.
Swallowing problems are very common in MS. I have had them too, off and on. Occasionally, when I'm having this problem during the day, I have had some scary incidences of waking up feeling like I couldn't breathe at night. I'm not sure if there's a connection or not. Have you had this problem before? Did the doctor mention anything about medicines to treat this as well?
They - meaning all sorts of doctors - have poked, prodded and tested me for all sorts of things related to this feeling of something in my throat and a choking (literally waking up and can't breathe choking!) that happens occassionally but hasn't happened for 3-4 weeks now (touch wood!).
The tests they have done since May include -
-Upper GI which looked like I had nutcrackers esophagus
-Gastric motility test (Quix's fav! LOL) to check for nutcracker esohpagus- all was fine
-HIDA scan for my gallbladder - it was fine, little sludge (yes, that is the correct medical term - sludge!)
-Thyroid ultrasound - it's normal
-ENT exam - said he couldn't see so sent me to their swallowing/voice expert
-Swallowing test - videoscope in upper throat to watch me swallow and say "eeeeee" - said it looked like a small acid burn on my esophagus
- BRAVO monitor implant done to monitor pH level for 48 hours - told it's not acid reflux causing the problem
-GI doc two weeks ago declared he thinks its anxiety.
I must say all this testing started well before the thought of MS had even entered the picture and they have been very thorough .......... I have good insurance thankfully.
I go to see my neuro on Monday to review my MRI films and discuss the possibilities with him. I am looking forward to this appt. for lots of reasons but especially to get his take on the swallowing and chest pains that I just keep thinking have to be related to the MS.
I hope your swallowing issues are identified in a more straight forward way.
I had a swallow test last week and agree that it was no big deal. There was quite an audience: an experienced Speech/Swallow Therapist, her trainee, a Radiologist (M.D.), and two others who just appeared to be enjoying watching live X-rays of someone swallowing!
They gave me various foods with flavorless barium paste: potato salad, bread, a carrot stick (dipped into the paste; "Just think of it as ranch dip!"). There was chicken on hand, but I'm a vegetarian. They also had a barium drink and a barium pill to swallow with water. Very interesting, except that I didn't get to see my own entertaining video!
I'm curious about what willowwoman7 said: "The therapist told me it's not truly accurate because you are completely focused on what you are swallowing. . ." Could you elaborate, or does anyone else here know if a normal test means you don't have dysphasia?
I didn't have any trouble during the test. The results were normal. But I'm continuing to have the same problems at home that sent me in for the test. E.g., I decided that maybe I could take my prescriptions and vitamins with water again. But I "missed" in swallowing them, as before, and have just resigned myself to using apple sauce or yogurt from now on. I also continue to feel like food is stuck just past the swallow point. WTF?
I'm concerned too about whether the tests will show anything. My PCP said that it can be hit or miss, because the esophageal problems don't happen 24/7. Mine certainly don't.
I've had a full range of bad sensations. Horrible pain right after swallowing, as though I'd swallowed whole some big jagged thing, for one. Nothing works for that except waiting till the normal process starts up again. I've had the same thing with food in the middle of my esophagus, and also at the very bottom. I can feel it, I think, anyway, when my stomach valve opens, and the pain is terrible, until the peristalsis is finished, and then magically the pain disappears. I've also had soup I swallowed come gushing out my nose for no reason. And I've had bursts of burning acid that magically disappear too.
So I think I run the gamut of dysfunction, but still the vast majority of swallows are normal. Go figure.
The problem I have with swallowing is ongoing and mild at this point. I inhale things occasionally..you know, they go down the wrong way. I can't recall the technical terms, but she said I have a weak swallowing reflex and a bunch of other stuff. She explained the test is not perfect because the person is not sitting there eating or drinking normally. They are given very tiny bites of stuff and told to take very small sips. In my case, that actually helps me with swallowing, but in turn does not reflect what truly is going on. Also, rather than a regular meal with family or friends where you are talking and stuff, you are totally focused on this test and the act of swallowing. Plus, it only takes about 2 minutes. I have food that begins to go down the wrong way, then pops back out. As a result of the test demonstrating weakened swallowing, I'm going for speech therapy to learn exercises and tips to prevent choking. They already gave me some.
Small bites or sips...one at a time. Make sure you've swallowed completely before you take a nother bite or sip
Avoid mixed textures - such as hard candy where you are dealing with something hard and then also have a thin liquid to contend with. Also told me to avoid cereal and milk. I now sometimes mix my cherios into plain yogurt. She said some fruits can be a problem for me, too, especially canned pinapple.
Pay close attention while eating to what you are doing. Family will understand why.
Takes me twice as long to eat, but hopefully this will also help me to lose weight. I need to lose 30 pounds, so I might as well get some benefit from it. (LOL).
My doc said that as the MS progresses, the swallow problem will get worse. For joy;
I hope that helped.
If something goes down the wrong way, cough, cough, and cough some more.
Thanks for all these details! I'm so sorry for what you're both going through and looking forward (not) to.
What I have in common with Essdipity is food going up the nose (just annoying with oatmeal; quite exciting with chili sauce) and occasionally refusing to budge in the throat.
What I have in common with Willowwoman is the test with tiny bites and total focus on swallowing, plus symptoms that aren't always there. That makes sense.
I really appreciate the advice you passed on. For what it's worth, here's some from me.
The speech/swallow therapist who did my test noted that I'm on bladder spasm meds that cause dry mouth and asked if I'm using Biotene products. I am, and I've noticed that using the mouthwash just before eating helps (though it doesn't add much to the flavor of the meal). CVS has less expensive dry mouth products.
She also said to stay upright 30 minutes after eating -- to not even lean over to tie shoes.
My sister is an occupational therapist who works with speech/swallow therapists. She has told me that for most patients, smooth, fairly thick textures are the easiest to swallow.
My worst week for swallowing happened to be election season last fall, when I was planning to canvass for Obama in Nevada and couldn't get much down, including a nice soft muffin. So I followed my sister's advice by taking my own meals along in a small cooler: soft, whole-grain tortillas, hummos (sesame - garbanzo spread), PB and honey in camping tubes, yogurt, instant oatmeal, applesauce, and V-8 juice. With fiber supplements.
I was surprised to find some reasonable foods on the road that weren't just milkshakes: soups, bread pudding, and a fantastic treat in downtown Las Vegas: a frozen banana dipped in chocolate on a stick had never tasted so good. I was pretty proud of dealing with the minor crisis creatively and still getting decent nutrition!
But I have to say, I'm not looking forward to being limited to soft foods sometime in the future. Though the weight control aspect does sound handy.
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