Tounge Twitching

I have been twitching body-wide for over a year and half. Started in my left hand, went to the whole left arm within a month - then body-wide.

I have seen several neuros, had an emg on the left arm and been told it is bfs. About a year into this - it went to my tounge. Over the last few weeks - it has been more frequent and it bothers me. While I just saw the neuro again on May 10th, 2010 - and told him about the tounge - he said it is benign - yet I don't know why I can't put this behind me. While I twitch in other places, I cannot accept that the tounge can be benign and just like the other twithing. I don't know if I read some bad posts online early on or what.

Can anyone with tounge twithcing respond with your experiences so I can try to put this behind me...

Thanks!

[Dr. A. Srivastava]

Hi, Thank you for your question. This twitching appears when the muscle contracts on its own (without nerve stimulation).  Most of the times these symptoms occur without any underlying disorder & they are not harmful or may appear after anxiety, hormonal imbalance, viral illness or long-term illness. However, sometimes this muscle twitching appears as atrophy and weakness of muscle as well. Most likely cause of this twitching with weakness or atrophy of muscle can be when the nerve supplying to hand/eye muscles is not functioning properly due to any neurological disorder. If you suffer continuous weakness and notice reduced strength of muscle bulk in areas, please arrange an appointment with a neurologist right away who will evaluate the possibilities here. Hope this information proves helpful to you. Take Care & Regards!!!

[alstiger]

bfs is pretty common. BUT, If you note any muscle weakness or muscle cramping you should see another neuro .As this is in the ALS forum, I assume you are concerned about this being an early sign of ALS. Mine started with muscle cramping (abs and under jaw) and then went to muscle twitching in both legs, and then to muscle weakness in calf. It is the muscle weakness that is key in differentiating ALS. Best of luck-

[cmjordan28]

Thank you for the response.  If you don't mind me asking - how long did it take from when you noticed cramping in the abs, under the jaw, to muscle twitching, to weakness in the calf - 6months, a year, longer?  Regards.

[alstiger]

don't recall exactly but I think:
- it took about 6 months from cramping to the twitching and
- then another 6 months before I felt tightness in my calf but had no real weakness or atrophy
-it was another 9 months before I started limping and had noticeable atrophy in the calf

So, roughly 18-24 months between initial symptoms and my diagnosis 8 months ago .Muscle weakness has since spread to my leg,hand and tongue .I am one of the lucky ones in that ALS is moving slowly though me as there is usually a faster progression from symtoms (symptoms) to diagnosis.

But , please don't make the leap and think you may have ALS. It is very rare. I know the negative thoughts you are having because I had them during the first signs of twitching as well. Don't let anxiety about what may be drive you crazy.Someone once said that worrying is like paying interest on debt you may never owe. Live each day like it is precious, because it truly is! The fact that you have had twitching for 18 months and no other symptoms probably means it something other than als (like bfs) . I wish you the best-