I just turned 49 in December, and have been having strange symptoms in my tongue and throat, plus on/off labored breathing over the past 2 months. Can someone help me with some of the initial symptoms of bulbar-onset ALS?
If the breathing is effected first, is it an on/off progression, that is, once the labored breathing begins, will it stay labored due to the muscle atrophy? Can it be labored for a hour or so one day, then OK the next, then labored the 3rd day, or is this not possible?
If the swallowing is effected 1st, same question. Once you have problem swallowing, does it even get better from day to day, or just continually gets worse?
And as for the speech, what comes 1st, atophy of the tongue or speech problems? Do problems with slurred speech begin the process, then visual observation of the tongue atrophy later on, or does tongue atrophy begin first, then after the tongue has deyriorated, the slyrring starts? My guess if the former (slurring speech 1st), but I don't know, and that's why I'm asking.
My friend who had ALS started with biting his tongue then once in a while his would talk as if he were drunk. That happened for a while back and forth, then he started having trouble with is speech on a more regular basis. I don't think he had problems with breathing until later. I feel so terrible for the people who think that might have this terrible disease. The only thing you can do is check with a doctor. It can take so long to get a diagnosis and maybe it's something else anyway.
marky, what makes you think it is ALS? Any other symtoms or did you doctor say you might have it? My Uncle had it and I know his breathing was the last to go. Do you by any chance have GERD or reflux promblems? Many times
reflux can be bothersome to your throat, swallowing etc. Let us know how you are doing.
That's what I was wondering. Is slurred speech usually the 1st sign of bulbar onset ALS? From what I've read, it is. I have had muscle twitching all over my body over the past 3-4 years (BFS?), but recently, I've been feeling them in my neck/throat area. I've also had problems swallowing, which could be from a number of things! Combining these 2 symptoms, + reading all the information on the internet when you google for "muscle twitches" always gets you to ALS! Needless to say, it scares the daylights out of me, and I think about every swallow, and my stomach goes into knots every time I feel a twitch in my throat. I was also trying to find out if muscle twitches in your neck/throat are a possible symptom of ALS, but I've never heard of this being the case. I'm not sure if it's the same as having twitches in your calf muscle. Any thoughts or guideance here?
I have been getting tested for an auto-immune disorder, such as lupus, due to high ANA results (1280). I also appear to have some sort of white coating / fungus on the back of my tongue, which is probably the reason for my swallowing/throat problems, but I just don't know. I've read where this white tongue/fungus (???) could be caused by an auto-immune disease like lupus SLE.
So that's my situation, and like many, the muscle twitching brings fear to the forefront, and I wanted to ask questions to those that may have more knowledge on the topic. Thanks for all your input, and I look forward to more comments that may put my mind at ease. Mark.
It has now been 9-10 days with a swallowing problem. I currently feel like there is a small bump or something down my throat that is making me gag something awful. With ALS, are there sensations of things in you throat that won't go down, or periods of gagging during the very early stages (gagging occurs while I'm not eating)? I currently haven't experienced choking while eating, or slurred speech, but I am constantly having to try to swallow, it hasn't seemed to come naturally over the last 10 days.
From what I've read, ALS doesn't involve abnormal feelings in the throat, like a lump, or like a small piece of food that won't go down. But I don't know, and that's why I'm on here looking for advise from someone who does. Please respond.
[QUOTE=marky1956]I also appear to have some sort of white coating / fungus on the back of my tongue, which is probably the reason for my swallowing/throat problems, but I just don't know.
I thought that fungus might be a yeast infection. People can get it in their mouth. It sometimes comes from immune deficiency such as AIDs. It can have other causes but not likely from ALS. You should check with your doctor.