Swallowing mechanism going kaflooey

[essdipity]

Lulu has asked me to give more details about the swallowing/esophagus problems I've been having intermittently. First I'll say that I'm no expert on this, and that not long ago Quix described the tests, pretty excruciating for her, that were done on her esophagus and stomach, as part of a big digestive system workup. I certainly defer to her personal and medical knowledge on this subject, and hope she'll correct any erroneous assumptions here. And also, of course, give us more information.

Starting last summer I've had quite a few episodes of agonizing pain immediately after swallowing. It feels as if I've eaten something huge, and that my throat muscles are being wildly stretched and contorted. Taking a sip of water doesn't help---it just sits there along with what I've swallowed. It has taken as long as 10 minutes for this to pass and for the food to get into my stomach. No choking and nothing blocking the airway. After a number of these 'spells,' the bottom end of the esophagus started getting into the act. I can tell when the stomach valve opens, because my chest feels flooded with fiery acid for 10 or 20 seconds, and when the valve closes again, that's gone. I became afraid that this malfunctioning might be injuring my esophagus.

I've recently had another and isolated episode of a different kind. I was eating soup, not choking or coughing, and swallowed a spoonful normally, or so I thought. However, all of it cascaded out of my nose and onto my clothes. Not a nice surprise.

Well, obviously I realized that something is wrong, but I haven't done anything about it yet. I did mention this to my PCP Friday when I was there for other things, in a sort of 'by the way' comment. I had just told him about my bladder diagnosis, and he said several times that that and the throat stuff are blatant (and he said blatant at least 3 times) symptoms of MS. He was quite concerned that I'm not getting the right treatment, and I reminded him I'm allergic to Copaxone and am on Avonex. Anyway, he called the swallowing thing Esophageal Motility Disorder, which I know has been described and discussed here from time to time. He gave me a referral to a swallowing center at the same hospital, but noted that if I'm not having trouble at the time, nothing might show up.

Some of our members might not know that this kind of thing is rather common with MS. If the trouble is mainly in completing the swallow, getting the food where it needs to be to do this, it's called dysphagia. Other difficulties, like mine, happen when the esophagus 'forgets' how to work properly. It's a mistake to think of the esophagus as simply a tube between the mouth and the stomach. In reality, there is a series of muscles all the way down, and these have to contract  the right way and in the right order for food to move the normal way. It's the first part of the peristalsis that occurs all the way through the digestive process.

Maybe it's time for more discussion on the forum. Is anyone else having this kind of problem? If so, is it all the time or just now and then? What have you done about it? Inquiring minds want to know!

Thanks,
ess

[sllowe]

Quix - put it on your list, but put my name next to it.  I remember the cranial nerve thread and believe I could quickly put it together and provide to you to brief before going live w/it.....Will that work?

[Lulu54]

try these two words together to get the place mentioned in my post -

"steady"
and "health"

this must be the competition that it keeps knocking it out!

never one to give up,

Lulu

[Quixotic1]

An Hp would be easy.  It is mainly a discussion about the neurology of swallowing, the cranial nerves involved, the other nerves involved, the relationship to MS, the ways to tease out the problem and the common therapies.  Anyone want to take it on?

Otherwise I'll put it on my list.

[sllowe]

Wow.  This is a good discussion.

Can we somehow capture what we know, and the general pop. info and get a HP going on this? Or, would this be too difficult due to the variations in what can, and may not be MS related?  Just thinking out loud.

For me, my main problems have been with swallowing AND chewing.

I would be chewing, then I had to think to finish (think about grinding my teeth the chew, etc), then think to swallow (i.e., tell myself now swallow).  Could this be that I simply forgot, and had to think it through to finish? It felt more like I just couldn't make each step happen.  My gosh, we've been chewing and swallowing automatically all of our lives. These "glitches" rot!

Oh, if I wasn't eating, apply the above scenario to anything else, talking, reaching for something, writing, etc.

[bellaf]

I also have problems swallowing but not food - mainly wine!
I never have shooters and when drinking wine i have to take small sips and most the time i have to concentrate for a while before i can actually swallow it or ill choke.
I was given a taste tester of some wine at a restaurant and was quite embarrassed when i held it in my mouth as i was about to choke. The waiter thought that meant i didnt like the wine he served me!!

[Lulu54]

Ok, the autocensor finally caught me - the bleeped out part of the web address above for the esophagus information is

************

just put that into where the ***** appear ! :-)

Lulu

[meg321]

I have had for many years a hiatal hernia and acic reflux and have taken medication for it.
When i started this MS process an infection showed up in my chest or lungs and i was told that my swallowing mecanism was 'bad' ? And the word dysphagia was used.  There was more i cant remember, since i can't remember s**t now, and after my last blood test at the MS clinic the infection came up again and i  just had the blood done again.

Hopefully i can rememnber to let you know what they say about it.

hugs meg

[Fluffysmom]

I found that comment about the general population occasionally "forgetting how to swallow" as I've had that happen a few times, and it is a scary feeling.  I am very glad to hear that it is most likely not something I'll have to get used to.

I'm glad that there are tests to help figure out what is causing these extremely uncomfortable symptoms I've been reading about.  I hope that there are also treatments to help with them.  Heck, I suppose advice like "take small bites, chew thoroughly, eat small meals", etc. are helpful if a person hasn't already tried it themselves.

I learn so much from this forum; I really hadn't thought about an esophagus getting fatigued, Heather! I unfortunately have been known to give mine too much of a workout at times! LOL!

Kathy


I hope Craig's endo to repair his stricture is a complete success.

[essdipity]

So are your esophageal abnormalities being attributed to MS, or is this a separate ailment?

ess

[Quixotic1]

I was not contradicting your statement that swallowing problems are common in MS.  They are extremely common.  I was only making the statement that the occasional "forgetting how to swallow" is very common, even with the general population and need not arrouse concern.  Any consistent/frequent or chronic or increasing problem DOES certainly need to be checked out.  

And thanks for all the cites.  These are always helpful.

Quix

[Quixotic1]

Well, this is the right point for me to chime in and talk about seeing my GI guy for all my resluts ???  hmmm, results.

My endoscopies showed a noraml and healthy GI tract.  My gastric emptying study was normal, but he said I likely still have episodes of poor emptying and to eat smaller meals and try not to have fat and fiber together,

My Esophageal Manometry showed higher than normal pressure within the esophagus - not sky high, but still abnormal.  He thinks I am having what they call "Nutcracker Spasms" which are sudden extreme spasms which actually close off the esophagus for a short time.

I told him again about the episodes I get of pain radiating up my neck and then 10 or 15 seconds of crushing jaw pain, like my jaw (both sides) is being pressed in a vice.  He again shuddered, but I reminded him that I have had two cardiac stress tests which were "Cone, Stold Normal" in the words of a very good cardiologist.  The most recent one I had was associated with obvious reflux, so I am sure the episodes are of reflux and spasm and not cardiac in origin.

So that is my story of what the docs do when your swallowing goes all kaflooey.

Quix

[Lulu54]

Here's a good site and the information from there about spasms......
http://www.************.com/articles/Esophageal_spasm__Causes___Risk_factors_a154_f140.html

"Possible causes of esophageal spasms

Although the etiology of esophageal spasm is unknown, there are several possible scenarios:

•    Increased release of acetylcholine appears to be a factor, but the triggering event is not known.
  
•    Gastric reflux or a primary nerve or motor disorder.
•    Micro-vascular compression of the vagus nerve in the brainstem has been demonstrated in recent researches as the possible triggering event. "

I especially l perked up reading the vagus nerve in the brainstem....

Lulu

[goofysmom1]

Hi everyone,
I am undiagnosed (in terms of MS anyway) but have had some experience with the GI problems as well.

Mine began July of 2007, with chest pain and lots of it!  It sent me to the doctor and after finally finding my current Gastroenterologist, I have been diagnosed with Acid reflux w/Barrett's esophagus, esophageal spasms and esophageal hypersensitivity.  Neat huh!  

Anyway, this all started very abruptly....I haven't ever had what would be considered "typical" acid reflux symptoms...heartburn etc.  My primary complaint has always been chest pain.  I have always been suspicious of how suddenly this all began and now with the other symptoms I have (numbness/tingling, vertigo, floaters, urinary/bowel issues, fatigue, muscle twitches & cramps, balance issues, memory issues, possible spasticity in hip), I think that the digestive issues are all a part of the same undiagnosed medical issue.

Chrisy

[Lulu54]

The MS clinic at Ohio State, where my neuro is, recognizes swallowing as a common MS problem.  here's the begining of their page and the web address if you want to read more.

"Speech and Swallowing Difficulties  

MS may cause lesions in the area of the brain that controls speech and swallowing causing people to experience speech and swallowing disorders. "


http://medicalcenter.osu.edu/pdfs/PatientEd/Materials/PDFDocs/dis-cond/general/dyspha.pdf

My best, Lulu

[Quixotic1]

Now, I wanted to say this separately.

When I complained to my neuro that sometimes I forget how to swallow, he said that this is not specific for MS.  He said that it is a VERY common complaint in all fields of medicine and common for normal people to have occasionally.  He explained that the mechanism of swaloowing is a very complex sequences of involuntary actions initiated by a voluntary one.  It seems that the sequence occasionally gets off track and you need to "reboot" the system.

If the inability to swallow persists for a long time, then it is likely abnormal, but the occasional inability to swallow is surprisely common and not to be worried over.

The chronic "knot in the throat" sensation is another symptom characteristic of anxiety.  Many doctors will dismiss it.  But, it should not be dismissed without evaluation , like an Upper GI Swallow X-ray or endoscopy.  A person can have a stricture (narrowing) in the esphagus, a web of blood vessels surrounding it, or pressure from an outside structure pressing in ((like a tumor or an enlarged thyroid.  My mom had a huge goiter that had grown inward and down behind her sternum.  When she complained that she couldn't swallow, she was placed and valium.  The goiter grew so large (internally) that it affected her heart rhythm.))

Quix

[doni54]

Me too!  I hate anything that resembles pain, especially needles!!!!  I guess because I can't do anything about the daily pain I have.....to volunteer for pain...i.e. tests....just is a tough thing.................doni

[Quixotic1]

I clearly need to set the record straight here, lol.

One, I am a wuss.

I had the endoscopy and it was painless.  It was done at the same time as my colonoscopy which was also painless, but the clean-out was not wonderful.  (my niece discover tact when she was three.  After she tasted brussel sprouts, she told my mom, "Grandma, these aren't delicious.")

I also had a gastric motility and emptying study to see if my stomach was emptying properly.  It is.  That was painless.

Now for the Esophageal Motility Study.  This study rquires that they pass a smallish tube down your nose into your stomach.  The first foot or so of the tube has these small transducers very centimeter or so.  The transducers make the tube bulge slightly but firmly.  Yes, it felt exquisitely painful, BUT

I have since seen an old CT scan of my nose and sinuses.  It seems that I have a sharp deviation - right at the entrance to my nose - so that the right side is very narrowed.  And the pain I had was right there near the nostril entrance.  If you have ever had a zit or sore there you know how tender that part of the nose is.  And, yes, they put it down the R side.  I had no idea of this or I would have had them do the other side.

Other people who have had this done have not had the pain, and the tech was very surprised.  Do NOT anticipate that you will have problems with this test.  It isn't as great as an E-Ticket ride at Disneyland, but I'm sure it would be fine for the normal person.

Now, my problem is that dry foods, such as dense bread or chicken breast, get caught in the throat, right at the top of the esophagus.  If it gets too stuck, the next time I try to swallow there is sharp pain and the food comes back out EXPLOSIVELY.  I avoid the problem by taking small bites and washing dry bites down with fluid before I swallow.

Other people should not have this pain.  If it is painful rather than just uncomfortable, try the other side!  I wish we had.

I'm such a wus.  I would like to be the heroic leader you all want, but alas, I am like the little man behind the Wizard of Oz.....

Quix

[essdipity]

Thanks to all for your comments and for telling about your experiences. I'm lucky that this thing occurs very irregularly and far from often. It's happened maybe 12 or 15 times all told, so that's not too bad. Maybe it will stay that seldom!

ess

[doni54]

Thank you for bringing this up and describing what it feels like.  I know it has been discussed before, but never in such detail.

I had never thought of this as another MS symptom, yeah, what do I know, huh?  I have had similar problems, but never related it to my other symptoms.

I can't do pills at all, just won't go down.  I take B12 in the liquid form, but can't take my other vitamins because I just can't swallow them.  I do the same as you when drinking or eating soup.  Not every time, but more than makes me comfortable.  

I have to concentrate when eating and chew my food really well or it will get stuck in my throat.  Can only swallow small portions.

Great, another symptom attributed to my nonexistant MS!!!  The joys of being undx, just never end do they?

Thanks again for keeping all of us so well informed, it does help a lot to know what is happening to us.

Hugs
doni

[monotreme]

HI ess,
   Craig has had the feeling like his throat is closing up for about the last nine months.  One Sunday two months ago, he kept choking on his food.  He also had alot of acid reflux for the past year.

   Upon hearing the symptoms, the GI doctor did an endoscopy and found grade 4 erosion of the esophagus (scale goes from 1-4, 4 being the worse end of the range).  He also found a stricture (narrowing of the esophagus) which will be attempted to be repaired on Tuesday with a repeat endo.

  The doctors think that it is related to MS.  So....I would go for the endoscopy if you can get one ordered from the center you mentioned.  You are put to sleep for it so it is not painful.   Craig was told to take Prilosec for the rest of his life and he has had no esophageal spasms since that.  

  Good Luck.  I hope after finding the problem, you can enjoy eating again.  I want to go to lunch again in the Spring!!!!!

  Elaine

[Lulu54]

Allisa, I do have that constant knot in my throat feeling again.  That's why I wanted Ess to write about her experiences to flush out all the rest of us who also may feel similar symptoms.


Ess ,thanks again - even though we may not be experiencing identical problems, we are both getting a sampling of what others are going through and maybe both of us will have an "aha!" moment before this thread is done.

All, This is a prime example of how this forum is at its best - sharing with each other until we come up with answers.  thanks for jumping in. I'll let you all knw what the GI doc says on Wednesday;

My best, Lulu

[Sailorsong]

I have only had this a couple of times, at least when it has come to food/drink. I never even considered telling any of my doctors about it as I just figured it was something I did wrong. Kind of like the coughing where you say "It went down the wrong pipe".

This topic gets me to wondering if the problems I have with coughing can be related to this? I cough quite often due to sinus drainage from my allergies. Most of the time just a couple of coughs will clear the problem. But some times I will feeling like I'm going to vomit or start choking during the coughing.

Dennis

[tot_teacher]

For the last 4-6 weeks I've had a knot feeling in my throat which you can "feel" when I swallow.  I do have trouble swallowing at times, and if not careful the food will end up in my sinuses.  I do have that "caught in the throat" sensation which is like you swallowed a large piece/amount of food which gets stuck.  It fixes itself within a minute or two.  Medication seems to be the only thing I always have trouble getting down.  I would say that daily I choke at least once on a pill which I have to force back up to try again.   I never thought of that as possibly a symptom worth mentioning to doctors.

Am wondering though if anyone else has the constant "knot-in-the-throat" sensation or if anyone has been told what that may be.

- Alisa

[mokibear]

I'm not weird!!! I never thought this was related to MS and have never mentioned it. I too get the exact thing as you but mine only lasts about 3 minutes. I've had it now for about 2 years but it only happens periodically thank goodness.

I too don't choke or anything but the pain is excruciating to say the least. I did tell the second last neuro about it who did think I have MS but this last MS neuro I saw never gave me a chance to tell her.

I remain undx.
Hugs
Moki