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Neurology (Expert Forum)
Question about ALS
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Question about ALS
by Jodi, May 27, 2000 12:00AM
Hi my son recently posted but realized you have to be 18. Well heres my question then.
My 15 year old son thinks he has Bulbar ALS. For the last 8 months he has had off and on widespread twitching. What bothers him the most is constant twitching of the tongue. He cant feel it but he can see it. He has no swallowing or speaking problems and he doesnt have any noticable weakness and his tongue strength seems fine. We went to our doctor and he said anxiety was the problem and said he was fine. My questions are.
1. After 8 months of twitching wouldnt he have some sort of noticable weakness especially with Bulbar ALS?
2. Of the cases of ALS that have occured in teens have they been the inherited form?
3. Have you ever heard or seen Sporadic Bulbar ALS affect someone as young as 15?
4. Would a regular doctor have a general understanding of ALS and if he had any doubt of something wrong wouldnt he of refered him to a neurologist? ( He looked at his tongue and checked his reflexes and said things were fine).
Thank you in advance.
My 15 year old son thinks he has Bulbar ALS. For the last 8 months he has had off and on widespread twitching. What bothers him the most is constant twitching of the tongue. He cant feel it but he can see it. He has no swallowing or speaking problems and he doesnt have any noticable weakness and his tongue strength seems fine. We went to our doctor and he said anxiety was the problem and said he was fine. My questions are.
1. After 8 months of twitching wouldnt he have some sort of noticable weakness especially with Bulbar ALS?
2. Of the cases of ALS that have occured in teens have they been the inherited form?
3. Have you ever heard or seen Sporadic Bulbar ALS affect someone as young as 15?
4. Would a regular doctor have a general understanding of ALS and if he had any doubt of something wrong wouldnt he of refered him to a neurologist? ( He looked at his tongue and checked his reflexes and said things were fine).
Thank you in advance.
Doctor's Answer
by CCF Neuro[P] MD, RPS, May 27, 2000 12:00AM
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
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
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?
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