Help with Neck/Throat Symptoms

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KnottyPirate93

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Okay, guys, do your thing and make me feel better.....:) My symptoms are in my throat, you don't know, (maybe you do), how frustrating it is to feel like someone has their hands around your neck all the time. I also feel postnasal drip, (I think), I feel like I have the lump in the throat, and every time I turn my head a muscle in my neck will twitch. Has anyone else had so many symptoms in the neck, throat, mouth area? At least, anyone that's still alive. I constantly feel like I have a mucus ball in the back of my throat, kinda like I'm going to gag, kind of like I'm going to get a cramp in my tongue or throat, all of which they say on the ALS boards is indicative of bulbar ALS. My neuro isn't worried, as you all know, but I'm scared to death AGAIN, any reassurance? I'll take ALL I can get. P.S. This bothers me even when I'm busy doing other stuff.....I don't believe it's anxiety.Shauna
 
Koopie: Please remember how rare it is to have bulbar ALS. Second, I don't know how old you are but probably too young to worry about this anyway. Third, if you doc isn't worried, then you don't be either (coming from a chronic worrier :rolleyes: ). And a BIG four, stay off the ALS sites. I have visited there and it doesn't do anything but scare you more. Until you are secure in your health, don't visit :) Now about your throat. You don't think it is anxiety, but I can almost guarantee that anxiety is a factor. It is totally not uncommon for us to feel like we have a lump in the throat, to feel like we are going to gag, etc. Heck, when I was at my worst, I would throw up every morning. It seems like my body had to do it to get a release from the tension. Just in case you've not been introduced to this site, visit . You will find all sorts of symptoms you can experience due to anxiety----and you don't have to be anxious about anything in particular. Some people suffering from anxiety would even say they are not anxious. However, the anxiety is internal. Give yourself a little while and if you aren't feeling more confident, see your doc again and have him do a clinical---tell him what you are afraid of--write down your questions and ask specifics. Then, ask him for something for anxiety if you need it for a while. You can get through this, so many of us are working it out every day and we all have bad ones. I am finally at a place where the good days outnumber the bad ones, but they are still there. If I can help in any further way, please feel free to PM me. I'll say a prayer in the meantime.BlessingsCindy
 
I second what Cindy has said TOTALLY. Dont you just LOVE Anxietycentre.com Cindy??? It was a life saver for me. Koopie- I have experienced what your saying off and on for years..it has gotten WORSE at times w/ ths MERRY GO ROUND of neuro disorders.Remember the URL I gave you which the MEDHELP CCF stated..You either have BULBAR ONSET or LIMB ONSET- U dont have both. Therefore if your twitching all over, been cleared...etc. etc...its BFS! Then take in the fact that all of a sudden your thinking BULBAR ALS....THE RAREST form ...to just so happen to start when you thought your twitching was due to ***..See what I am saying! Cindy is very correct. I get so anxious sometimes I almost gag til I throw up. At the beginning of this it happened soooo very often. I kid you not.Blessings, Lovely
 
Koopie-Hi there! Hey I had issues with my throat and tongue and all maybe around 8 months ago. You are correct they can be constant (with BFS) but here is the thing that you have to remember and please trust me I discussed this with my neuros. BULBAR ALS is the most aggressive form of ALS. By the time you exhibit bulbar ALS symptoms the clinical exam will show definate clinical weakness in other limbs. I would definately attribute the lump in your throat to anxiety, this because I could not swallow for months correctly because I "paid attention" to every swallow. I get twitches and cramps on my face, and UNDER my jaw and chin. These cramps cause my mouth to lock up and for me to pretty much yell with my teeth clamp shut they hurt so bad. I was talking to my boss about a week ago and I held up my index finger (knowing it was going to happen) and she was like "Oh my GOD Sean are you ok!". I was saying "ummmm huuumm huum" because it was twitching and cramped. Koopie like my neuro said (that has atrophy and twitching in HIS shoulder). ALS is VERY progressive and never gets better and never stays the same. BFS you can have symptoms come and go (or stay). I have EXTREME perceived weakness in my right arm and left leg...I get stiffness and cramping in arms and legs and I feel like I cant walk sometimes (I actually have to push through it). You MUST understand that if you were having sypmtoms related to Bulbar ALS that started last month you would be having speech issues this month...and they would be getting worse and worse. If you have Bulbar ALS they way to see it is to say AHHHH and relax your tongue at the bottom of your mouth. You would see THOUSANDS of twitches on the TOP and BOTTOM of your tongue (according to both neuros) that are fibrilations (this is the only muslce that they can be seen in without an EMG). So if you have to...say "AHHH" and look at your tongue. Now I get tongue twitches but the fibrilations would be all over the tongue and non stop and are NOT ABLE TO BE MISSED and you would run to the neuro at that same moment. I am telling you this because I also thought I had Bulbar until I realized its completely different than I thought and my neuro went over it with me in DETAIL because he has diagnosed it. I get twitches all over including the neck and they drive me crazy. My neuro said that bulbar is so rare that he diagnosed one case of it (besides at MAYO where he got his internship) and the guy came in and had NO twitching but could not hold his head up AT ALL. So my friend Koopie...check out the tongue, say AHHH and realize that its BFS. Im glad you brought this up because I didnt get over it until I sarted finding dents in my forearms and then after a month it completely stopped. Best of luck to you!Sean B.
 
Hi KoopieThanks Sean B for your post. I too, since being cleared by the neuro, have begun to worry about bulbar. I convinced myself that I could not swallow and was only taking fluids and Ensure. I was losing weight and feeling weak. I went to my GP and asked if my anxiety was making me nervous about swallowing and therefore making it harder. Like Sean B I was focused on every swallow and convinced that I was losing the ability to do so. My GP prescribed a medication to calm me down and although I'm eating slower than I used to I'm getting more confident about my swallowing now. I've noticed that I CAN swallow and that nothing gets stuck. I stay away from very dry foods. I seem to have trouble with bread and french fries, but today I ate a submarine sandwich and now I'm realizing that my anxiety was affecting my ability to swallow.Sandra D
 
I was waiting for some GOOD REPLIES to this post. Just a week after getting cleared from my NEURO with a CLEAN EMG I too started thinking of Bulbar ! WHY, well for one I am in my last month of pregnancy and I snort and snore a lot lol :LOL: 2. I have a lot of drainage and sinus pressure 3.) I am anxious about the delivery of my baby. I'd be more scared but for years I've had times where I couldnt swallow a certain drink down until I Stopped thinking about it. Started happening at about 18 years of age (I am now 28) it was right around the time I got I got dx'd w/ generalized anxiety disorder.Also, As Sean said...in your clinical when they look at your tongue and its relaxed in your mouth- Thats the TALE TALE SIGN. They are looking for fibs (yes it can be seen in tongue) , Atrophy, and so on.Thanks for the reply Sean! Your Awesome!Lovely
 

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