Recent content by suzanne1

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    Anyone go to Beth Israel for testing?

    Not to Beth Israel, but if you can come to NYC and you are concerned about ALS - you should see Dr. Lewis Rowland. He is the authority not only here in NYC, but hugely reknowned in the world - he founded the Eleanor and Lou Gehrig ALS Center at Columbia Pres. - and has been seeing and doing...
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    you should go.Nicest, loveliest man. He sent me a long letter about our office exam, why it is...

    you should go.Nicest, loveliest man. He sent me a long letter about our office exam, why it is normal. He said - no positive head reflexes - cannot be bulbar als. You would have head reflexes - jaw jerk(hammer on your chin your jaw would shut), snouting reflex (brushing your upper lip in the...
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    he is the nicest doctor I have ever seen - and it unbelievable to think that he literally is the...

    he is the nicest doctor I have ever seen - and it unbelievable to think that he literally is the most renowned ALS doc in the country and he gave me more attention than people half his credentials. He tested all my reflexes, usual neuro exam stuff, and simply said "no way ALS" would never even...
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    Dr. Lewis Rowland at Columbia in NYC

    HI ALL, Anyone been to see him? He founded the ALS Center there. I posted the "Dysphagia" post last night freaking out about blowing food out of my nose after eating last night - first time ever. And I got scared all over again about my twitching meaning something more than just twitching. I...
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    Dysphagia?

    Thank you so much for the comments. Appreciate it a great deal. I got so freaked out because after it happened, I of course looked it up. What I read on the med sites, was talk of "nasal regurgitation" - a symptom of soft palate weakness which occurs in Bulbar ALS. So now I am worried all...
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    well I just got freaked out last night because I blew ice cream out of my nose after eating it...

    well I just got freaked out last night because I blew ice cream out of my nose after eating it. when I look that up, the med sites talk of "nasal regurgitation" a symptom of soft palate weakness which occurs in BUlbar ALS..so now I am worried all over again!
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    Dysphagia?

    I just go super scared. My background - have been twitching bodywide for 9 years. Seen m any neuros and was absolutely OK with a diagnosis of BFS. Then last November, my tip of my tongue began to twitch intermittently. I saw 2 neruos who said I was fine - normal clinical exams so normal they did...
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    pls do tell...I have been twitching for 9 years - body wide. i learned to deal with that, and...

    pls do tell...I have been twitching for 9 years - body wide. i learned to deal with that, and then recently my tongue started - pulling in on the surface in one spot, it hurts actually - no speech or swallowing issues. have been to 3 neuros in 2 months - all normal exams (they will not even do...
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    Michelle - any updates with you? what does your neuro say? I have something very similar, have...

    Michelle - any updates with you? what does your neuro say? I have something very similar, have been told it is nothing - 3 neuros with 3 normal neuro exams in the last 2 months...they will not even do an EMG they say i am so normal...but I have body wide twitches and the tongue twitch that...
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    neuro + pic hand

    For what it is worth, I, too, have dents in my hands when I hold them the way you are in the photo. But I have perfect muscle mass when i do the action your neuro asked you to do - lay them flat. I was just at neuro yesterday for a follow up - he is a neuromuscular specialist and a former head...
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    Tongue twitching

    Thanks for the replies. So I scheduled an appointment with a very well-regarded head of neuromuscular neurology at Cornell here in NYC - a great guy. He used to run the ALS clinic here and now has his neuromuscular practice at the hospital. He saw me the other day, and basically said twitching...
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    Tongue twitching

    Can folks describe if there is any difference between "benign" tongue twitching and the type of tongue twitching one sees in ALS in the tongue? I have occasional tongue twitches, accompanied by a burning, pulling, painful contracting feeling in a small area on the tip of my tongue that come and...
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