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easyRider5

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Hi,

I'd like to know if these are symptoms of Bulbar--sorta freaked I know that does not help. Here goes:

- Right side of face above forhead/brow to cheek is tingly has not gone away. Feels like it wants to make my eyelid droop but it does not, it is very sensory. Tingling affects my nose and sometimes in my chin. Seems the muscles of face work fine, lift brows, hold a smile, puffy cheek test

- Tounge twitches every now and then (just noticed) but sometimes more feels like tingling in tounge

- sometimes feels like I have a knot in my throat, which affects swallowing occasionally but food does go down. This symptom comes and goes thru the day.

- Tired a lot

As an fyi, I've had MRI's and CT's of head (several), blood work, spinal tap, and EMGs of Arms and Legs (but not face)
 
Not bulbar ALS symptoms, Bulbar starts with slurred speech and eventually progresses to impaired swallowing. It does not involve face "tingling" or knots in the throat. If you haven't (or much more importantly, if no one else hasn't) noticed and speech slurring then find some other ailment.
 
thanks...pretty certain the face tingling on right side is not 'start'? I do notice that I clear my throat a lot but I wonder if its nasal dranage or something. I see an ENT soon.
 
also, sometimes i have to take a breath to complete my sentence, could be anxiety ? Not sure I slur my words though...
 
You will know if you slur...I whistle my "S"s and its more difficult to say them especially when anxious. Most importantly people around you will notice more than you. I am trying to figure out if mine is from the anxiety induced bruxism/TMJ from the past 4 months. I have clenched for 2 months straight and its def not a weakness of my tongue that little booger can go its my jaws that dont want to help me speak lol

If you are not having slurred speech and with all the sensory stuff def don't worry about ALS and you didn't mention an age. ALS is rare but Bulbar onset is even rarer.

Speaking of... Barry did your paraspinals show denervation on your emg..mine were clean everything else was dirty but I do have some cranial something going on. This Lyme's is a terd.

Kel
 
Hi, well, I dont quite know what slurred speach is. I notice that I clear my throat a lot (ergo going to see ENT), but I think(?) I talk ok., though i wonder.

The knot in throat and scratch feeling make me clear my thoat a lot, plus it feels like i have nasal dranage. I must admit I do have to take deep breaths on occassion , to talk or other stuff -- not sure why that is.
 
Kelly, my EMGs were a while ago the last was in the fall of 2007, and I was so overwhelmed that I never thought of asking for any details. I do remember the first one that I had was all over my body but did not involve my tongue. The neurologist who did it was an MS specialist and she told me that there were some signs in my right arm and my left leg. This was long time (at least a year) before I had any symptoms there although these are my worst limbs now. After that I had a bunch of other tests at the ALS clinic and my diagnosed was confirmed in Jan 2008.
 
easyRider5, ever had a drink or three? That is what slurred speech sounds like, the kind of speech that would have you doing a breathalyzer for Mr. or Ms. Police.

When it happened to me it was not me that noticed it first, it was my wife.
That is the thing with ALS, it is a subtle, creeping disease. Most people that have an actual diagnosis (everyone with a diagnosis that I have ever talked to) will tell you that it is not something that just hits you one day. It is something that is just barely noticeable at the beginning and progressively gets worse.

Sure, I do a lot of throat clearing but that was way after my other symptoms and is a result of me not being able to swallow anything at all.
 
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Easy sounds like allergy season! And you will know if you slurr babe..your tongue will not want to move :) how old are ya?
 
I am 47.

Just so uneasy feeling, tired, strange feeling on right side of face, lump in throat, clearing throat, and constantly taking extra gasp of air.
 
I too have questions regarding Bulbar symptoms. I first started with tired leg muscles, twitching, decreased voice last year in July. I freaked out from them, went to a local neurologist and they assured me that it was nothing. In September I went to Mayo Clinic in Rochester and they did EMG and Nerve tests on my legs/arms and said no ALS. Symptoms have progressed further to include numbness in my face, very weak voice, extremely tired arms and legs and incredible pain in abdomen muscles. I went to the Neurology clinic at the U of Minnesota for further testing. They repeated the leg/arm tests and one in my tongue area (through the bottom of my chin). I also had Ismec Exercise test, lyme's test and other general blood tests. It has now been 9+ months from the beginning and I don't have any answers. My question - has enough time gone by that the EMG and Nerve Tests would be reliable? Can you have ALS and still not have it show up in these tests? My muscles are wasting away but still all of them work - I'm just so very tired and actually feel sick. Can anyone give me any insight to my issues? I know that you are not doctors I just thought maybe some one can give me a clue if this horrible disease can escape these tests?
 
I am 47.

Just so uneasy feeling, tired, strange feeling on right side of face, lump in throat, clearing throat, and constantly taking extra gasp of air.
 
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