Sorry, not sure why the last thread was closed. I don't think I mentioned my swallowing issues along with breathing problems they are pretty concerning. It's got to a point where swallowing water is the hardest it takes forever to go down as just sits there in my throat same with food. Is this caused by bulbar weakness? It really concerns me because that coupled with the tongue fatigue/weakness when moving food around my mouth.
Throat and swallowing issues
- Thread starter Roxxy
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The reason your last thread was closed was written clearly by our mod GregK
You are pushing beyond rudeness now and no you are still not describing ALS. Time to leave in truth.
You are pushing beyond rudeness now and no you are still not describing ALS. Time to leave in truth.
These aren't "new" symptoms it's been a gradual decline over a year. I don't understand how I'm being rude sorry if I've come off that way. Isn't it throat or soft palate weakness when it takes stuff awhile to go down? Does it not start this way before liquid starts coming back up through your nose?
starente15
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If you have test scheduled in a few weeks you should get answers soon. When I google 'difficulty swallowing', 12 top reasons came up ranging from GERD to snake bites (yup, I couldn't believe this one myself). ALS didn't make the cut. Have you seen an ENT yet?
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Rox, the last thread was closed because there was nothing more to say until you have EMG results. Don't write any more about what you feel; go out and do what you can, so much more than others here. Stop back by with your EMG report.
Best,
Laurie
Best,
Laurie
rose
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Roxxy, Years ago I used to be active on this forum, and when I came back I swore to myself I would not get dragged back into trying to help anxious posters who seemed to be suffering from medical anxiety, and who would not listen to reason.
So, as I'm posting here, that means I don't think you're necessarily suffering from anxiety, although your symptoms may seem worse because of the anxiety they cause.
Just because what you describe does not sound how ALS presents, does not mean its in your head, it just means it is not a way that people who are most familiar with ALS have experienced it.
What the people on this forum understand best is ALS, it makes no sense for them to start taking guesses at what else it could be. That helps no one. The exception would be if someone read your post, and had personal knowledge of the same exact symptoms. Its unlikely that will happen here.
Wait for your testing. Don't focus on any disease, it will cloud your perception.
There are tests that can be performed that will show EXACTLY what is happening when you swallow. Your neuromuscular specialist can order this for you. It is usually performed with a speech and language therapist (SLP) and radiologist.
There are three (I think) sets of constrictor muscles that move food down to the stomach after it leaves your mouth. These are involuntary muscles, you have no control over them. This test will show how these muscles all work. Always keep in mind, that its not how you feel, but rather how you "fail", and that is what the testing will reveal.
If your test is completely normal, then, you're feeling the problem. If your test shows you have "pooling" or a delay in movement, or anything out of the range of normal, then something in your swallow process is failing. There is a very big difference in these two things.
Food coming out the nose because of soft palate weakness has nothing to do with constrictor muscles failing to move what you swallow downward.
And, if the muscles aren't moving food downward, that does no mean your epiglottis will necessarily stop moving adequately to cover your airway. This is the number one thing your doctors will look for, they will want to know that you "protect" your airway (the protection is involuntary).
The same for your breathing issues, there are sophisticated test that can be done, or your pulmonologist may wish to just follow you for a while.
Things oftentimes do not move rapidly in the process of being diagnosed. Its just how it is.
Not knowing is hard, but spending time on forums like this one will serve no good purpose for you.
It has been my experience that some people who find themselves here, because they're afraid they have ALS, just become more and more determined to "prove" to this group of people that they don't know, have never met, and will most likely never meet, that they have justification for their fears. Don't let yourself be one of those people.
Trust your doctors, ask for second and third opinions if you don't trust your doctors. Most importantly, don't try to make your symptoms "fit" ALS or any other disease, it will only serve to slow the diagnostic process down for you. And, if your medical team thinks your exaggerating, etc, you run the risk of them starting to think it might be a "non organic" cause. You don't want that to happen. You really don't.
If I were you, I would ask to be referred to a ENT (ear nose and throat specialist). That is the most logical next step, from what I've read of your posts here. You already have a pulmonologist, but, you don't have anyone who specializes with the swallow. Think of the neuromuscular neurologist as being more generalized. They know nerves, and they know muscles, but they will want input from an ENT, SLP, and testing ordered under their supervision.
All of the best luck to you. Be your own advocate. Just be patient during the diagnostic process, its hard, but its really the best way.
So, as I'm posting here, that means I don't think you're necessarily suffering from anxiety, although your symptoms may seem worse because of the anxiety they cause.
Just because what you describe does not sound how ALS presents, does not mean its in your head, it just means it is not a way that people who are most familiar with ALS have experienced it.
What the people on this forum understand best is ALS, it makes no sense for them to start taking guesses at what else it could be. That helps no one. The exception would be if someone read your post, and had personal knowledge of the same exact symptoms. Its unlikely that will happen here.
Wait for your testing. Don't focus on any disease, it will cloud your perception.
There are tests that can be performed that will show EXACTLY what is happening when you swallow. Your neuromuscular specialist can order this for you. It is usually performed with a speech and language therapist (SLP) and radiologist.
There are three (I think) sets of constrictor muscles that move food down to the stomach after it leaves your mouth. These are involuntary muscles, you have no control over them. This test will show how these muscles all work. Always keep in mind, that its not how you feel, but rather how you "fail", and that is what the testing will reveal.
If your test is completely normal, then, you're feeling the problem. If your test shows you have "pooling" or a delay in movement, or anything out of the range of normal, then something in your swallow process is failing. There is a very big difference in these two things.
Food coming out the nose because of soft palate weakness has nothing to do with constrictor muscles failing to move what you swallow downward.
And, if the muscles aren't moving food downward, that does no mean your epiglottis will necessarily stop moving adequately to cover your airway. This is the number one thing your doctors will look for, they will want to know that you "protect" your airway (the protection is involuntary).
The same for your breathing issues, there are sophisticated test that can be done, or your pulmonologist may wish to just follow you for a while.
Things oftentimes do not move rapidly in the process of being diagnosed. Its just how it is.
Not knowing is hard, but spending time on forums like this one will serve no good purpose for you.
It has been my experience that some people who find themselves here, because they're afraid they have ALS, just become more and more determined to "prove" to this group of people that they don't know, have never met, and will most likely never meet, that they have justification for their fears. Don't let yourself be one of those people.
Trust your doctors, ask for second and third opinions if you don't trust your doctors. Most importantly, don't try to make your symptoms "fit" ALS or any other disease, it will only serve to slow the diagnostic process down for you. And, if your medical team thinks your exaggerating, etc, you run the risk of them starting to think it might be a "non organic" cause. You don't want that to happen. You really don't.
If I were you, I would ask to be referred to a ENT (ear nose and throat specialist). That is the most logical next step, from what I've read of your posts here. You already have a pulmonologist, but, you don't have anyone who specializes with the swallow. Think of the neuromuscular neurologist as being more generalized. They know nerves, and they know muscles, but they will want input from an ENT, SLP, and testing ordered under their supervision.
All of the best luck to you. Be your own advocate. Just be patient during the diagnostic process, its hard, but its really the best way.
rose
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My previous reply was so long, and my keyboard kept having problems.
I came back to add that when I had my first swallow study done, I thought everything was just peachy. I consented to one because my doctor wanted to do it. It was very abnormal, and I hadn't a clue!
Subsequent ones done, that showed I had a complete penetration of the thickest test bolus, did I feel it? Nooooo, no sensation whatsoever. Not to say I didn't sometimes cough after eating, but, for testing? I just sat there, each and every time, expecting to be told it was normal!
The moral is, let the experts who you are under care of, have time to get to the bottom of it.
I came back to add that when I had my first swallow study done, I thought everything was just peachy. I consented to one because my doctor wanted to do it. It was very abnormal, and I hadn't a clue!
Subsequent ones done, that showed I had a complete penetration of the thickest test bolus, did I feel it? Nooooo, no sensation whatsoever. Not to say I didn't sometimes cough after eating, but, for testing? I just sat there, each and every time, expecting to be told it was normal!
The moral is, let the experts who you are under care of, have time to get to the bottom of it.
Rose, i sincerely thank you for the long post it puts a lot of things in perspective for me. I truly hope it isn't als, but if it is I will deal with it. The breathing issues are especially concerning because of the low test result on the MIP and MEP because I know those test for muscle weakness. I've never been a big googler I guess you would call it, but I have researched als through and through on this site and it seems definitely possible. If I do have als would this be considered respiratory onset since that's the first problem I noticed?
Could this be respiratory failure? I'm finding it very hard to breathe today my ribs are really tight and my throats feels closed and it won't stop twitching in my ribs. Any little exertion causes burning in my chest and rib muscles. Can anyone relate?
I'm also noticing my breaths are becoming shallower everyday today is the worst it's so hard getting air in or out. I want to go to the er, but they won't do anything unless I'm pretty much on my death bed.
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If you dont mind me asking. What is your age Roxy?
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If you are really having breathing problems you should go to the ER. We are not doctors here and we can't help you in a crisis situation. If there is something major going on with you they will find it and treat you. We can't do that.
You also need to be honest with the doctor and tell them your fears and symptoms. That includes thinking you have a fatal disease and are asking a forum for advice. Anyone would tell you if you are having major breathing problems to head to the hospital.
By your posting here and not going... it leads me to believe you are having anxiety issues and looking for someone to tell you that you have a horrible disease and quite frankly that's not our responsibility . Thank goodness because we are just trying to make it through another day.
You also need to be honest with the doctor and tell them your fears and symptoms. That includes thinking you have a fatal disease and are asking a forum for advice. Anyone would tell you if you are having major breathing problems to head to the hospital.
By your posting here and not going... it leads me to believe you are having anxiety issues and looking for someone to tell you that you have a horrible disease and quite frankly that's not our responsibility . Thank goodness because we are just trying to make it through another day.
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