Swallowing issues...MS related or not?

[Newdave]

My sister has RRMS! She is only 24yrs old. Her sympthoms are mild: last march she experienced facial numbness, it went, and gone so often a day, for 1 month.
After this experiencies she visited the neuro. The mri shows some lesions, after 3 months there were the same.

In autum 2013 she catched cold, and experienced double vision (it went and gone so often a day for 3 weeks).

In 2013 her condition was not the best (fatigue, and cognitive issues).

In march 2014 she had double vision when she looked right, and swallowing issues (when she swallowed, the bolus went down slowly), and a very strong fatigue. This sympthoms are mild, but disturbing, so she got solu medrol. This sympthoms quickly disappeared.

Nowadays (after her last flare), she experience some swallowing problems:

Difficulty chewing (not at all)
Coughing while eating or immediately afterwards (sometimes after meal 1-1 cough, but rarely)
Excessive saliva or drooling (yes, but she experienced before MS - maybe her wisdom teeth are growing)
A weak, soft voice (not at all)
Aspiration, meaning food or drink is going down the windpipe into the lungs (sometimes last one month - 2-3 times saliva, and once foodbolus)
Once she swallowed the liquid, and minor part of this dripped off his nose.
Vomiting food back up (not at all)

In 2010 she had tonsillectomy, and after this surgery, she experienced "wrong pipe things" more often like the others.

What is your opinion?

[supermum_ms]

The full research paper is available here:

http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1808-86942013000400011&lng=en&nrm=iso&tlng=en

I noticed a few things from this research study.....Assuming validity of testing methodology is established, keep in mind the big picture that makes up for that 90%...just over half, 61 (50.8%) had zero to mild dysphasia, with mild dysphasia often no dietary changes are necessary, sometimes behavioural changes are advised eg slow eating, sips of liquid after swallowing, chew thoroughly etc, alter medications if current meds a possible influence of dry mouth, Gerd, reflux etc. In perspective, mild dysphagia is not usually thought of as disabling...    

"Swallowing performance assessment showed that 108 patients (90%) had abnormalities and only 12 (10%) were normal in this task. Among those patients with swallowing disorders, 49 (40.8%) had mild dysphagia, 44 (36.7%) moderate dysphagia and 15 (12.5%) severe dysphagia. "

• Normal swallowing - normal oral retention of the foodstuff (no food escape before and after the pharyngeal phase of swallowing), no food stasis, laryngeal penetration or tracheal aspiration; 12 (10%) were normal

• Mild dysphagia - mild stasis after swallowing food (stasis taking up less than a third of the area of the epiglottic vallecula and piriform recesses), absence of laryngeal penetration or tracheal aspiration; 49 (40.8%) had mild dysphagia

• Moderate dysphagia - moderate food stasis after swallowing (stasis of foodstuff taking up about two-thirds of the epiglottic vallecula and piriform recesses), laryngeal penetration of food, but no tracheal aspiration; 44 (36.7%) moderate dysphagia

• Severe dysphagia - important food stasis after swallowing (stasis of food that fully occupies the region of the epiglottic vallecula and piriform recesses) and tracheal aspiration. 15 (12.5%) severe dysphagia.

They do acknowledge the methods of establishing swallowing issues (dysphagia) in MSers has been inconsistent, test methods varying from study to study and basically accounting for many of the variable results.

"..The association between dysphagia and MS rating scales (Clinical Evolving Forms of Disease, Functional Disability Scale Extended - EDSS [Kurtzke's Expanded Disability Status Scale] and Functional Disability Scale Systems - EIFS) has been reported by some studies; however, there is no consensus and there are controversies regarding the methods and the results obtained4-6,8,12-19."

This noted observation from my perspective, should theoretically call into question the validity of this study's results too, and until the testing method used in this study, rating scales, data base etc is applied in further research projects, it would be more prudent to take a wait and see approach in the mean time. Research that is significantly at odds (over double) with the accepted norms, like this one is, should be viewed with a healthy dose of scepticism, it maybe validated but imho at this point in time, it should be viewed as questionable.

Food for thought......JJ
  

[Newdave]

Hello!

There is the article:
http://multiple-sclerosis-research.blogspot.hu/2014/06/clinic-speak-swallowing-problems-in-ms.html
I think it's interesting...

[supermum_ms]

I've personally never seen stats as high as 90%, most of the MS organisations seem to be saying it's approx 30-40% for ‘dysphagia’, it's also identified as being more common in late stages of MS but can still happen at any time.

This is one of the best hand outs i've found.... good explanation on swallowing issues in MS, has a few tips that might help, and explains the different swallowing issue that people with MS often experience......

http://www.msaustralia.org.au/sites/default/files/essentials-swallowingdifficulty.pdf

This one is good but very simplistic and not as informative but still worth reading...

http://www.msfocus.org/article-details.aspx?articleID=47

Cheers.......JJ

[Newdave]

Brazilian research shows, this rate is 90%

[jensequitur]

I've had that problem for a while. It's something to do with the soft palate in the back of my throat. Things get 'confused' back there. I have to duck my head so that I can swallow and make sure things go down the right pipe. I also aspirate saliva frequently without meaning to.

I also have a condition that sounds like somebody tapping on my inner ear. Turns out that it's a twitch of the soft palate. I have lesions in the medulla oblongata and the pons, which controls that bit.

[HVAC]

She can have what they call a swallow study done. They have suggested it to me.

Alex

[Lulu54]

the problem with swallowing - called dysphagia - is more common among mSers than was originally thought.  Recent studies show more numbers.

NMSS has a very good basic page about dysphagia and how it can be treated.

It is a horrible feeling to be choking like this and i hope she can get some help.
-Laura