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michelleG

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Hi...I am trying not to be concerned about ALS, but I don't like the symptoms I have been having for nearly a year. It started with body wide twitching which then settled down into my lower left leg and foot. My neuro has not noted any clinical weakness, even though my right leg seems to fatigue when driving long distances and I notice it is sore after not really doing much of anything. I did have an EMG performed shortly after the twitching started and then a repeat one 6 months later which showed mild denervation in one foot muscle, which was explained to me as being nothing sinister, but rather local trauma, since there were no other signs along the nerve root. Anyways, I now have a blocked eustachian tube, and it has not gone away with any OTC medicines or nasal sprays, so the doctor has now put me on a 7 day course of steroids and a five day course of z-pack. What concerns me most is that the doctor is stumped as to why I suddenly got this eustachian tube dysfunction since I have not had a cold, allergies, or a sinus infection. My kids have both been sick, but except for this, I have steered clear of the cold. The pressure has radiated from both ears to down my jaw, to the point where my jaw is completely achy by the end of the day. I have read that a blocked eustachian tube is common in people with ALS, specifically bulbar, because the muscle in the inner ear is not strong enough to hold the eustachian tube in place. Have any of you experienced problems with extreme pressure in your ears, when otherwise you were not sick. Does this sound like it could be related to ALS and should I consult my neuro regarding it? Sorry for posting so many questions at one time. Thank you for your help.
 
I'd like to see where you read a blocked EU tube is common in ALS. That's a new one on me. There really is a lot of misinformation on the internet. I think you need an ENT not a Neuro. You don't have ALS based on a blocked EU. tube.

AL.
 
Thanks Al. I read it on this forum when I searched. I believe "Big Mike" had attached an abstract article and I also read it on another ALS site that said some people with ALS deal with a chronic clogging of their ears and nose due to weakening of the inner ear muscle. So you have never dealt with this problem? I think it primarily affects those with bulbar.
 
I don't have bulbar problems yet. If it did happen to a bulbar patient, it would be further into the illness, well after speech and swallowing are affected I would think.

AL.
 
My husband has had bulbar ALS symptoms since 2005. He never has had Eustachian tube problems. The only time he's gotten a clogged nose is when he got a cold or pneumonia.

If you are referring tho the article about the 60 yr old, you will see it was noted this was the only case ever reported as such.
 
I have read volumes on several ALS forums for the past 3 years and this is the first I have heard of it. I would put ALS out of your mind and see an ENT like Al said.
 
Up until the last few months my only ALS symptoms have been bulbar and I have never had a blocked eustachian tube or pressure in my ears. I did have a head and chest cold that had me plugged up but that is what normally happens with a cold, at least where I come from.
 
while I surely think you do not have ALS. I have also read of the ear problem, and do suffer from it myself.. I have read info about it, and have seen neuro's talk about it. I believe it is Jaw jerk related myself, and a umn symptom. Gosh that is one granpa had not heard of , sure means it is not that common. It was one of my first symptoms, I flew to Calfornia, and could not figure out why my ears would not unclog, went to ent. about 6 months later other symptoms started. this darn disease is so random..
 
Thanks everone. Hoping...do you still suffer from clogged ears or did it go away on its own?
 
My eustachian tube problem

I can't say for sure that ALS caused my eustachian tube dysfunction, but I am very suspicious that it is at least a contributing factor. It is nearly always more prevalent in my left ear, which is the side of the body most affected at this time. Recently, I woke up with that side of my ear completely blocked and experienced accopanying pain. Later, I was able to open it up by doing mouth exercises and the pain went away. Usually it is not nearly that bad but there always seems to be at least minor blockage in that ear, and I use Flonase each day which helps. This has been going on for several years. Interestingly, what minor swallowing problems I experience is confined to the left side of my throat. It comes and goes and is not currently a problem.

I'm not saying eustachian tube dysfunction is a common problem in ALS patients, but it should not be dismissed out of hand.
 
while I surely think you do not have ALS. I have also read of the ear problem, and do suffer from it myself.. I have read info about it, and have seen neuro's talk about it. I believe it is Jaw jerk related myself, and a umn symptom. Gosh that is one granpa had not heard of , sure means it is not that common. It was one of my first symptoms, I flew to Calfornia, and could not figure out why my ears would not unclog, went to ent. about 6 months later other symptoms started. this darn disease is so random..

Intersting how you say it may be a umn symptom, hopingforcure, as I was diagnosed with upper motor neuron predominant als earlier in the year. My suspicion is the muscles around the eustachian tube in my left ear are weakened, and UMN damage can weaken muscles.

Do you use or do anything to help relieve the problem hopingforcure?
 
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Big Mike

Have you been to an ENT? Do they see more pressure built up on one side of your ears? With eustachian tube dysfunction, there's normally either a slight bulge or retraction on the ear that's bothering you. Have they checked for that on you? They can also use a tympanogram or something of that nature to check to see whether or not you have abnormal pressure in your eustachian tube, which is apparently pretty accurate. My ears tend to not be clogged in the morning, but by the end of the day, my right ear feels pretty congested. The ENTs believe this is due from the pressure of my TMJ joint, but I don't really know for sure. Recently, I had a few days where there wasn't any pressure at all, which made me attempt to steer clear of the ALS thinking. Oh, by the way, I did mention this ear congestion to my neurologist. He said it is not that common, but it can be seen in late stage ALS or bulbar ALS specifically. He stated that the main reason that the eustachian tubes lose function in ALS is because patients lose too much weight. Fat cells surround the eustachian tubes and help them to keep their shape. When the fat cells are lost, the eustachian tube doesn't work the way it's supposed to work. This is what was explained to me. Sorry if it doesn't make sense. He really didn't put it in words that I could completely comprehend.
 
Have you been to an ENT? Do they see more pressure built up on one side of your ears? With eustachian tube dysfunction, there's normally either a slight bulge or retraction on the ear that's bothering you. Have they checked for that on you? They can also use a tympanogram or something of that nature to check to see whether or not you have abnormal pressure in your eustachian tube, which is apparently pretty accurate. My ears tend to not be clogged in the morning, but by the end of the day, my right ear feels pretty congested. The ENTs believe this is due from the pressure of my TMJ joint, but I don't really know for sure. Recently, I had a few days where there wasn't any pressure at all, which made me attempt to steer clear of the ALS thinking. Oh, by the way, I did mention this ear congestion to my neurologist. He said it is not that common, but it can be seen in late stage ALS or bulbar ALS specifically. He stated that the main reason that the eustachian tubes lose function in ALS is because patients lose too much weight. Fat cells surround the eustachian tubes and help them to keep their shape. When the fat cells are lost, the eustachian tube doesn't work the way it's supposed to work. This is what was explained to me. Sorry if it doesn't make sense. He really didn't put it in words that I could completely comprehend.

Thanks for the response Michelle. I did have it checked a couple of times several years ago, but the specialist didn't seem to think much of it at that time. That was long before I was diagnosed with ALS. My thinking may indeed be wrong on this--I'm still in the milder stages of the disease. But the fact that the left ear gets worse than the right when it does bother me and because I started having some other symptoms appear around that time (on the left side of my body), makes me suspicious. Also, my muscle weakness problems tend to come and go in certain areas.
 
Hi Big Mike,
I really do not use anything for the ear problem, I do believe it is from UMN problems, and that does explain the reason it sort of comes and goes. I think that you are very similar to me in presentation, it is clear that you suffer from many umn problems. I love your idea about the disease becoming chronic, that to me is a realistic wish. I am all on board with you Big Guy.
 
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