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JEB1979

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I've spoken about my symptoms before, beginning in mid-May I first noticed fasciculations in my calves, and afterwards in other parts of my body, including my face.

Since about a month ago, I've been getting fasciculations in my tongue. At first, it was just one or two every few days, but then it got to a point where for three days I constantly had them on my tongue. After that it kind of calmed down and now it's happening just once or twice a day, but strong enough that I can definitely tell it's happening.

Along with that has come the throat-clearing. I feel like there's something (saliva? mucus?) stuck at the back of my throat and am clearing my throat all day.

Now, I'd been having some episodes of shoulder/neck pain which I hadn't associated with anything and just figured were stress-related. (I did see my regular doctor about this and he said they were probably caused by stress) These happened intermittently throughout September and have mostly stopped since then, though they still happen occasionally.

Does anyone on this forum who suffers from bulbar onset have similar initial symptoms? I'm just scared and confused at this point, since my twitching started in my lower legs, so I would've assumed that meant it was limb onset, but now I'm having tongue fasciculations along with throat issues.

I have an EMG scheduled for Nov. 19th, which will hopefully be more thorough than the September 30th one (which my neurologist said was "useless"), but I won't see my neurologist again until December 3rd, so I'm still a long ways away from getting any answers.

My neurologist did say that ALS was a definite possibility. Don't know what to do at this point, the stress is really getting to me.
 

Kosmoskatten

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ALS fasics are supposed to not be felt, and have more of the charactheristic of a constant vibration, subtle movement, than intermittent twitches. ALS usually do not start bodywide.

I am no doctor, but I am a medical student, and what you describe sounds like a possible vitamin deficiency. I would recommend you ask for a full bloodwork if it has not been done.

Try not to stress, chances are your swallowing issues are coming from you focusing too much on your swallowing and getting stressed out by the situation. It is not easy, but try to remain calm. Your swallowing issues would have gone progressivly worse if they were associated with bulbar ALS, they would not have gone better.

I must ask; what did the doctor saying it is possible ALS base this on? Your clinical exam?
 

JEB1979

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I have been to neurologists who have characterized my twitches as fasciculations. While they're usually subtle, they are sometimes strong enough to be felt.

I've had full bloodwork done, as well as a cervical and thoracic MRI. These were all normal, including my vitamin levels, except for my B12 level that was at 270 pg/mL, which my doctor said was within the low range of normal. I've been getting B12 shots, but my neurologist said that the level was not low enough to cause the symptoms I'm having.

The neurologist said ALS was a possibility due to my family history (aunt had it), as well as the fact that the fasciculations in my calves are constant, non-stop. The other fasciculations in other parts of my body are more intermittent. The fasciculations in my tongue are more recent.

Since my swallowing issues started, things haven't gotten any better.
 

Kosmoskatten

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Familial ALS usually manifests much later in life ( due to your nickname ending 1979 on this site I presume that is also your age ), typically between 50-60 years of age. Only 5-10% of everyone having ALS have the familial/hereditary type. Given that ALS is very rare to start with, that is a very low percentage.

Do you have any weakness in the affected limbs? I would rather have someone diagnosed with ALS responding to this than me, but I would say that with fasics since may you should have noticed weakness.

What did the clinical exam show in terms of reflexes, weakness, babinsky etc?
 
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