Swallowing and ms???

[from2344]

I have posted a few times now about my swallowing problems and now I am more confused then ever.

I had an upper GI a couple months ago and was told that I have esophogeal dysmotility. The Dr. told me it was most likely related to my ms but I would be sent to a gasterologist for a professional opinion.

I then saw the specialist and he didn't even hear me tell him I have ms. He did a endoscopy at which time he dilated my esophagus and started me on meds. It didn't work so he again dilated my esophagus again and it didn't work again.

Last week he sent me to see a speech therapist where they did x-rays while I ate and drink different foods and fluids.

This is the confusing part for me....... After the test was complete she showed me how my body swallows all these different substances and she tells me where my problems are and how to try and fix them. She refers me to her clinic for speech therapy to learn some new tools. What she did tell me is that it IS related to the ms and explained how the epiglottis normally works and how my brain isn't talking to it fast enough due to the nerves not functioning right. I explained to her that this problem comes and goes and has for about 3 years and is getting worse for me. But that not always does it last for more then 24 hours and there is hardly ever 28 in between lapses.

So, I am still not understanding why its related to ms when it doesn't fit into what the typical ms pattern. I believe what she is telling me as she has several years experience with ms and swallowing but it makes no sense to me.

Can anyone explain this to me if so thank you so much.

Tira

[MSer102]

So, I am still not understanding why its related to ms when it doesn't fit into what the typical ms pattern.

I think the disconnect is that somehow you got the idea that there's a "typical MS pattern." If you think about what the speech therapist said without thinking that there's any MS pattern to compare it to, would it make more sense?

There really isn't an MS pattern. It's easy to think about what happens when nerves don't work anymore and a function is completely gone. It's not as easy to think about what happens when nerves are just sick and damaged but they still function. Sometimes those sick nerves have good days and bad days just like we do as people. So some days the nerves will work better than they do on other days.

Although our internal bodies are pretty constant, there still are variations. Our body temperature and hormone levels and other chemical levels go up and down normally during the course of a day and from day to day. So the environment our sick and damaged nerves are working in changes and how well the nerves work in that environment changes.

That's why there's variation in our symptoms of all kinds. The amount of variation is different for everybody. So there's no "typical MS pattern" for MS symptoms. Your symptoms go with what your body does and they may not match anybody else's.

So if you think about your symptoms as being unique to you and not part of any overall MS pattern, does what the speech therapist make more sense?

[hunterd]

I do not know why it is related to MS, but I do know it is related as I also suffer from it, and I was told it was due to the MS. one of the things she told me to do that has helped is that when I am about to swallow I am supposed to hold my breath. I hope this helps you.

[Kimba22]

Tira,

Swallowing problems can be caused by a relapse (which I think is really what you were referring to when you said "typical ms pattern") but also as a result of permanent damage caused in the brainstem by lesions - which explains why this symptom has been getting worse for you. I found this article from the MS Society of Australia that is easy to understand that I think explains swallowing difficulties in MS very well; everything from how we swallow, to diagnosing problems, to managing them. I hope you'll find it helpful for answering your questions.
http://www.mssociety.org.au/document...difficulty.pdf

Best wishes,

[from2344]

Kimba, thank you so much for your response and for the web site you led me to.

I learned a lot of information there. The most interesting for me was that heat and stress can cause my swallowing problems to happen. I know this to be true for Lhermittes that I suffer from but I didn't know there was a correlation for swallowing.

I think I do understand now from the responses I got and I do appreciate that. I start speech therapy this week so far all I have been told to do is drink out of a straw.

I know were all different but I wasn't sure how a relapse can be considered a relapse when I may have problems randomly for a few days and then a few days of no problems with my swallowing. Where as other symptoms have to last for more then 24 hours to be considered a relapse.

[Kimba22]

Hi Tira,

Glad you found that information helpful. And now that you mention heat and stress can cause your swallowing problems, I can appreciate where some of your confusion is coming from. When a symptom is brought on by something like heat or stress, something known as a "pseudo relapse" vs. a true relapse can also occur. I don't know if you ever heard of that before. Here's a link to the NMSS that explains them both (see the green box to the right for pseudo exacerbations, and I also recommend opening the pdf near the bottom of this box).
http://www.nationalmssociety.org/abo...ons/index.aspx

I hope that speech therapy is helpful for you. (And that you'll soon be able to do more than just drink your nutrition through a straw!) Best of luck and let us know how you are doing.

[from2344]

Thank you again Kimba, you have been very helpful to me

I am new to all of this I was diagnosed last June and it was quite a surprise to everybody. I literally only had the Lhermittes and swallowing issues going on and to me they were just strange never did I think it was from a disease I knew nothing about.

Needless to say after much testing and mri's I was shocked to learn I had 1 lesion on my c spine and 7 in my brain and was told I had RRMS.

I am learning from everyone here as I go but it is very helpful for me to have a website to refer to

Oh, and yes my swallowing is affected by heat like the Lhermittes is, it's very strange it only lasts about 5 minutes or so unlike my the Lhermittes that originally lasted 3+ months and my swallowing started 3+ years ago and has progressed from having problems only when I laid down off and on to now I can literally choke on my own saliva.

Like I said I am very new to this and if I seem a little confused I a probably am lol. But it's people like all of you that has helped me so much on my short journey this far.

Have a Happy New Year!!!!

[Kimba22]

You are very welcome, Tira! Just glad I could help, along with everyone else, here. I didn't know anything about MS when I was diagnosed, either. This site has been very helpful in my MS journey, too. It's wonderful learning so much from each other!

Wishing you a Happy New Year to you, too!!!

[Fishytrout]

Just a quick little post.

I wanted to pass this easy tip I received HERE at MSW years ago.

When having problems swallowing turn head 90 degrees to right or left.

I do this and it works for me almost all the time.

Hugs to all.

[Carolinemf]

hi,
I have had swallowing problems and stiff jaw as well over the years. Like "we' all do it is sometimes difficult to determine whether it is ms or something else.
My husband experiences EXACTLY what you have described but he doesn't have ms. It took him years and has had all those tests and more to get a diagnosis. He has a condition called Eosinophilic Esophagitis (EoE). He has probably had this since birth but the symptoms worsen with stress and age and he hadn't worried about the symptoms until they were to bad to ignore. The main triggers are food or other allergies and this is why the symptoms disapear and reapear seemingly at random and intensity.
I just thought I'd mention this in case you hadn't heard of it before and because your symptoms you described were so typical of his. Theres heaps more info on Google.
Most of us also usually have more conditions than ms to deal with as well and i wondered if this may have been the case for you as well.
All the best. i look forward to hearing how you get on.