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 midline your lips would purse) I asked him if he wanted to do an EMG and he laughed and said "no way, what for?".
He was the one who diagnosed Jennifer Estes, founder of Project ALS. He has been doing nothing but looking at ALS, and other neuro diseases, since 1973!!! he founded the center - the only one allowed to call itself the "Eleanor and Lou Gehrig Neuromuscular/ALS Clinic"
ALS does not hide from these experienced specialists.
I am so happy for you. My wife says that I should see the top ALS guy. My Neuro said that if it would make me feel better and if I would indeed believe him he would give me a referral. My GP just sent me last week to a doctor who deals with muscles and who gave me a complete clinical he spent over an hour and a half with my wife and I. He hit me with a hammer in places I never knew could be hit. He grabbed my tongue and made me push this way and that way. His conclusion was the same as everyone else. I won't say it because I dont want to Jinx it. I know deep down that I should go to see this ALS doctor who in fact I spoke with on the phone for twenty minutes on the phone after he reviewed the info I sent him. But I am scared to see him. I have had nightmares about being examined by him.
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 give me an EMG with this kind of clinical so normal.
We talked about the tongue. He feels that true tongue fascis should not be seen in BFS. But he looked at my
tongue and said if he has to LOOK for and wait for them to appear, then they are not of the ominous variety.
I think what we may have on the tongue is something else ...not true fascis seen in ALS.
I feel really good... needed him - who sees ALS all day long everyday for over 30 years - to tell me this.
He asked "what more can I do to reassure you?" - he was so pleasant... said he would write me a letter so I could look at it every time I got scared again, read how benign this all was and feel better.