Jodi(and JR),
The doctor here can't give 100%. Sometimes we can't get 100% reassurance. Its hard to live with and the anxiety can make things worse. Reading alot of info on the net can scare you deeply. There is aways conflicting reports of symptoms, etc. It can be overstimulating and do more harm then good. There is just too much information for the layperson to understand. This is a great site and I agree that this probably is not ALS. What I would do is tell your doctor that you would really like a referral to a neurologist for peace of mind. Anxiety is not a healthy state and the doctor should take into consideration that it hurts and that it will only make the symptoms worse. Having strange symptoms is scary. Your doctor should address this.
Good Luck
Dear CCF Neuro
So the constant twitching of the tongue is nothing to worry about? You can see little spots on the tongue kind of jump. Again this is nothing to worry about?
Dear Jodi:
ALS has been seen in teenagers but this is very rare. When this occurs it is usually the inherited form but not all cases have been verified. ALS is always accompanied by muscle weakness. This would be especially true in bulbar ALS. Here, the cranial nerve muscles, chewing, swallowing, tongue movement, palate movement would be weakened. There would be increasingly difficulty in chewing, beginning to be noticed with tough things like steak, and progressing to other less chewy foods. This is very progressive and the usual time from diagnosis to death is approximately 1 -2 years. I would agree with your physician and your son does not have ALS.
Sincerely,
CCF Neuro MD