Swallowing problems

Erica · 09-12-2009, 12:12 PM

I was recently diagnosed with ALS, even before my diagnosis I had complained of muscle tightness/pain in my throat(same side as my affected shoulder/arm).
Now started having some choking episodes, and increased pain in my neck/throat.
Has anyone experienced pain or muscle tightness in their neck/throat before onset of swallowing problems?
Thank you.

BarryG · 09-12-2009, 01:20 PM

Hi Erica, my first symptom was slurred speech and I have never had any throat tightening or pain. Swallowing problems and choking episodes came quite a bit later (I don't remember exactly how long but I would say at least 6 months). I am very sorry about your diagnosis and I would recommend that you get a peg tube to help with your eating and drinking.
All the best.
Barry

BethU · 09-12-2009, 02:08 PM

Erica ... My throat/swallowing problems are worse on the side of my greater weakness, too.

My swallowing problems came in stages. Like Barry's, it was about six months after speech slurring started. First, I couldn't chew solids well, because of dry mouth, which was caused by my mouth starting to droop open. About 6 months after that I began not being able to swallow liquids.

I didn't have any pain or tightness with the initial onset, but I do have some throat pain now. Part of it is recurring thrush, part of it is just ALS.

This disease is so crazy, and we all have such individual quirks in how it progresses, it's a wonder any of us share symptoms! Have you seen a speech therapist? They can give you all kinds of advice on how to try to avoid choking, especially doing the "chin tuck." In this, you bow your head. This shortens the distance food or liquid has to travel in the throat, and minimizes choking.

As Barry said ... the ultimate help is a feeding tube (it's a small tube that is implanted in your abdomen to your stomach). In the meantime, do all you can to keep your weight up. It's a good idea to review the Heimlich maneuver with anyone you live with, too.

Take care.

brooksea · 09-12-2009, 04:44 PM

You could be having muscle spasms. My husband gets them every now and then in his throat. Not much fun, he says.

Erica · 09-12-2009, 05:00 PM

Thank you for your suggestions...
i had a swallowing study in the end of May, a couple mo before my diagnosis.
My next appt at the ALS clinic on Sept 28th; should I be asking to repeat the swallowing study?
Again, thank you for your help, E

danjay · 09-12-2009, 06:57 PM

My initial symptoms were choking and as of now I take all my food by PEG tube. On the other hand my speech is still pretty
good, just have to deal with saliva. I never had pain or tightness though in my neck. I think we are all just unique in progression. If the swallowing study might give hints on how to swallow more effectively (for me, if I tuck my chin to the right it helps) then it would be a good idea.
Best of luck
Dan

rose · 09-13-2009, 09:42 PM

Erica, Yes, I'd ask to repeat the swallow study (if they don't offer to first)

It does sound like you're having muscle spasms, which are very painful when they're in the neck/jaw area! I don't get them that often, but really really don't like them when I do.

I have another swallow study coming up soon, and plan to talk about this with the SLP, but I wanted to ask if anyone else has problems swallowing with their chin tucked? It makes it hard for me to get anything to go down, I feel like it makes my throat close up too much. Am I crazy or what?

serenade · 09-13-2009, 10:49 PM

I have pain and tightness every day in my neck and jaw, worse if I yawn or strain my throat in any way. I still eat solids just fine but choke on liquids. Just had a barium swallow and now need to thicken all my liquids as to not have fluids go down the wrong way. Having a peg put in soon to be on the safe side. A swallowing test would be a good idea! Your doctor can give you medication to help with the tightness I take them when they get to really bad and they do help but make me sleepy.

Al · 09-13-2009, 11:23 PM

I get pain/ cramps in throat muscles now when I yawn. Quite painful.

AL.

handinhand · 09-13-2009, 11:41 PM

Hi, yes I have had a lot of tightness and pain under my chin. This was one of my first symptoms.. It does hurt very bad. Lately it is starting in my neck also. I am going to ask the Dr. next visit for some kind of muscle relaxer???
Rose, I do not do very well with the chin down when drinking either. I am choaking so much more lately. I am eating lots more soup. Bread is just about a thing of the past. Steak and Chick out. more yogart and granola.. Water without bubbles is out. I find that I can eat fish better than most other protein. Things keep getting worse every week. I hope it slows down for a while... sigh!!! How do you stay so upbeat??? I am getting more and more down as the days go by. Lin

BarryG · 09-14-2009, 12:01 AM

Lin, I hope that you are in line for a peg tube. I does wonders for your morale when you can eat for pleasure rather than out of necessity. Like you, bread is a distant memory for me but I am still able to choke down a small amount of steak and chicken (very small pieces and very carefully) more for the taste than nutrition. Fish is good because it breaks down easily and has high protein. Yogurt and Boost pudding are also good, and I can also eat a bit of oatmeal but the main food that I still take by mouth is my morning smoothie. I'll say it again, if you are choking a lot get a peg as soon as you can.

The chin tuck does work for me when I am trying to swallow solid food but water only works when I drink out of my tap. I have attributed my ability to drink water out of the tap with being bent over but now I wonder if it is because the water is aerated. I am going to try to drink out of the tap without the aerator end on and see how it works.

handinhand · 09-14-2009, 12:24 AM

Quote:

Originally Posted by BarryG

Lin, I hope that you are in line for a peg tube. I does wonders for your morale when you can eat for pleasure rather than out of necessity. Like you, bread is a distant memory for me but I am still able to choke down a small amount of steak and chicken (very small pieces and very carefully) more for the taste than nutrition. Fish is good because it breaks down easily and has high protein. Yogurt and Boost pudding are also good, and I can also eat a bit of oatmeal but the main food that I still take by mouth is my morning smoothie. I'll say it again, if you are choking a lot get a peg as soon as you can.

The chin tuck does work for me when I am trying to swallow solid food but water only works when I drink out of my tap. I have attributed my ability to drink water out of the tap with being bent over but now I wonder if it is because the water is aerated. I am going to try to drink out of the tap without the aerator end on and see how it works.

Hi Barry, no I am not in line for the peg. I emailed my Dr. this past week with all my new symptoms. I will see him on the 6th of Oct. I am not to keen of the peg. Waiting to see how Glen does?? Have you heard? I just don't know about prolonging this. If I get much worse I would rather not ... I do give a lot of credit to those who do all that they can, I just don't think I am as brave... I really want to have this over with before I end up in bed . I want to be gone before I can't take care of myself... I don't hear anyone on the forum talk like this?? Maybe something is wrong with me???? I appreciate all that I read and how helpful everyone is and I love joining in,but when it really gets down to it this is how I really feel... SAD, Lin

BarryG · 09-14-2009, 01:41 AM

Lin, I am so sad that you are sad. There is nothing wrong with you (other than this awful disease of course), I worry every day about how things will turn out for me and my family and what the rest of my life will be like. None of us want to be a burden or be unable to take care of ourselves, that is something we all have in common. You are no less brave than anyone else here.

As far as the feeding tube is concerned it really isn't a big deal either in the getting or the using, I'm sure that Glen will be fine when he gets his on Tuesday (I think). The way that I look at it is that the feeding tube just makes the time that I have left more enjoyable, I have no illusions that it will make me "better". It will extend my life only in the fact that I won't starve to death and will give me more energy to appreciate the life that I have and to enjoy being with my family and friends. And about the only time that I get really grumpy is when I'm hungry so with my tube I am a nicer person to be around.

I hope that you will be with us for a long time cause we need all the help that we can get!

Barry

BethU · 09-14-2009, 05:12 AM

anybody else have problems swallowing with their chin tucked? It makes it hard for me to get anything to go down, I feel like it makes my throat close up too much. Am I crazy or what?

Rose ... I couldn't swallow pills in the chin tuck position, no matter how many times the ST told me it was easier that way! For a pill, I had to position it on the back of my tongue, and as soon as you chin tuck, it falls out of place. But it did help (for a while) with liquids, up until the point where nothing helps.

paleshia · 09-14-2009, 07:13 AM

Lin, I too have to wrestle with the prolong life/ don't be a burden question. You are so brave to be able to just get up and live everyday right now. I was watching peter pan with my son the other day and there was a great line in it that said, "there are different kinds of brave." It's a great scene about pesonal sacrifice for your family. Even when you don't feel it, know that anyone who is facing this disease is most certainly brave!

love and prayers to you,

jen