A question on bulbar onset

[gurudev]

Hi Guys,

I won't waste much of your time, just wanted to have few clarifications. It would be really helpful if you can please comment on any of symptoms if that looks like ALS.

I started having frequent facial twitches (i.e. tongue, eyes, throat, lips, cheek etc.) and have calf muscle twitches for about last four months . The tongue twitches are something that I could not see when I stick out my tongue but sometimes I feel that edges of my tongue are popping. I have had a "so called" clean Neuro exam, normal blood test and EMG done on my right arm and right leg a months back which showed no denervation, which I am being told as normal. In the neuro exam, an intern of the main neurologist just wanted me to stick my tongue out for only one second and just tested by jaw muscle once. However, he did other tests thoroughly like walking on toes, heels etc. The neuro is not an ALS specialist but has been practising for 30 years now. However, the person who did emg few days later said that she has seen a lot of cases of ALS and my case does not fit. So at the follow up I have been told its most likely benign but he wanted me to return if I find any exacerbation of symptoms. I have no slurring speech i.e. not at least pointed by others or swallowing issue till now. But can an emg on limbs likely to pick up bulbar onset of ALS as well? Is it wise to go for another neuro who is ALS specialist?
The problem is I am 28 now and doing PhD. So when I asked neuro or emg specialist that if this anything like bulbar onset, they were very amused and I think did not take seriously. But I know especially in Asian Indians ALS can strike at early age and its not very improbable. I am obviously not trying to get diagnosed with ALS but does not want to build false hope.

Thanks in advance..

 

[dalvin]

Why does no one ever read the stickies? If they did they wouldn't keep asking about twitching.

 

[affected]

the person who did emg few days later said that she has seen a lot of cases of ALS and my case does not fit.

There is your answer, you didn't need to ask people with a terminal illness to take their precious time and energy to read or reply.

Work with your doctors and you will solve your health anxiety issues I'm sure. All the best, and stay away from here it is only increasing your anxiety.

 

[Atsugi]

GURU,

The only symptoms you described were widespread twitches. ALS does not start widespread. Instead, twitches occur in serial order, one by one, as each nerve is destroyed and it's corresponding muscle becomes limp and useless. Twitches can be anything, and are not diagnostic of ALS.


You mentioned a clean Neuro exam, a normal EMG, and no slurring speech. These are good signs.

Dalvin and Tillie and your doctors are right: You don't have ALS.

 

[gurudev]

Thanks Dalvin, affected and Atsugi... I hope that's what I needed to confirm...