Bulbar onset with normal EMG?

Vivz

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Hi everyone,

I am a 32 year old female worried that I might have bulbar onset als. I hope you can help me with some information on bulbar onset als. I struggle with articulating certain worlds like "cooking" , "cleaning" , etc. I also have a lot of saliva in my mouth and often choke on liquids. My voice gets hipernasal and an ENT doctor confirmed that I have weakness of my soft palate (he doesnt know the cause but the right side does not lift as high as the left one). Another ENT said my vocal cords have reduced movement on inspiration. I also have widespread twitching that moves in different areas. Anyway, I ve seen a neurologist and I had a full body emg test including the tongue which came back normal. Have you heard of bulbar onset als with normal emg? I had these symptoms for about 8 months now, slowly getting worse. So I am just on wait and see approach and see if anything else develops. But I am naturally very worried. Thank you all for your help.
 

lgelb

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I would not be concerned about ALS because an EMG would show some hint of bulbar dysfunction with what you are describing. I would ask about the possibility of being treated empirically for GERD, dry mouth and/or allergies. I would also work on hydration and record yourself sleeping to make sure your breathing is not difficult during sleep. I am sure one of the ENTs would want to follow you, also.

Best,
Laurie
 

Vivz

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Hi Laurie,
I have been treated for gerd and it made no difference. What about if only upper motor neurons would be affected initally? The emg would be negative I assume then...
 

lgelb

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Your issues do not accord with UMN-only disease. Moreover, if the twitching meant anything or if you truly had bulbar onset, the EMG would not have been negative.

My advice is to stop trying to talk yourself into the proposition that you have ALS, ensure that your ENT issues don't include anything treatable (including with speech therapy), and get on with your life.
 

Vivz

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Hi all,

Here is my story hoping you can help. I ve been having twitching (constant in my right calf and then widespread in other parts of bosy) and speech / swallowing issues for a few months now. I cannot project my voice or scream. I also have difficulty saying certain words like "cooking", "cleaning", etc. I have seen an ent dr and he said my vocal cords have slightly slowed movement. I had 2 full body emgs 6 months apart which have been negative. However, my speech did not improve ( I tried speech therapy too). I also sometimes choke on liquids. Another ent noticed that my soft palate deviates to one side and thought maybe that was causing some of my issues. Is it possible for this to be bulbar onset als?
 

ShiftKicker

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Hi Vivs, it looks like you have an already open thread where you've posted and received answers before. I've moved your new post there to keep everything together and folk can see what has been discussed already.
 

lgelb

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If the speech therapist and ENT do not see something treatable, and the EMGs are negative, I would not worry. Widespread twitching also argues against MND. I might get a second ENT opinion from that perspective just in case since you say the problem is getting worse, however.
 
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