Old 07-16-2017, 07:23 PM #1 (permalink)
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Default Bulbar Onset Progression?

Hello to everyone here.

I was hoping to get some feedback on how bulbar onset has progressed in your experiences. I understand that every patient is different and some symptoms may manifest earlier than others.

I say this because I have been having increasing difficulty over the past few months with the muscles in my face, masseter muscle specifically. 10 months ago, I started to get twitches under my tongue, on my cheeks, forehead, and in my lower face. I was already experiencing twitches all over my body at that point and just chalked it up to anxiety. However, these twitches (unlike the others) never seem to stop. I first noticed the twitches when I tried to smile in front of a mirror and saw that my cheeks wouldn't stop shaking. My face appeared to be having a seizure of sorts.

I also began to notice that my facial muscles had shrunk over the past year, around the same time I noticed the twitching in my face. I try not to make a habit of checking for atrophy but it does concern me that my face is losing muscle matter somewhat rapidly. I should note that both sides of my face have lost considerable mass, right side more so. My voice has always been nasally and I've slurred my words since I was younger so I wasn't concerned when I saw those as potential symptoms. I have, however, experienced other bulbar symptoms including drooling, water leaking out the corners of my mouth when I take a drink, biting tongue, jaw getting fatigued while chewing and spitting.

Other non-bulbar symptoms would include: random cold spots (neck, legs, face, arms), sharp almost needle-like pains in my head area, headaches, increased dropping of small items (I seem to drop things like my phone or pencils very easily), scalp tingling and crawling sensation (if feels like there's an ant crawling over me all the time).

Side note: I am interested in learning if ALS patients are more prone to developing certain compulsive behaviors or tendencies. I say this because I have this urge to constantly puff out my cheeks just to make sure I can still use those muscles. I believe this might be unrelated but any little info is important.

So again, any feedback would be greatly appreciated.
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Old 07-16-2017, 07:55 PM #2 (permalink)
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Default Re: Bulbar Onset Progression?

Oak Forest, your symptoms are numerous and somewhat non-specific, so I don't see much point to speculating or trying to relate them to others. Have you seen a neurologist, had an EMG?

Best,
Laurie
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Old 07-16-2017, 09:58 PM #3 (permalink)
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Default Re: Bulbar Onset Progression?

Hi Laurie,

I have not seen a neurologist. My GP will not recommend me to see one. I was given a basic neurological exam during the visit and everything appeared to check out normal. I'm going to stay persistent in getting a referral to a neurologist.

Warm regards,

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