Old 02-21-2019, 04:28 PM #1
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Default Very Concerned about Bulbar

Thank you to anyone taking the time to read this and giving me your thoughts and insight. Please know that it is truly appreciated. I have read the stickies, but still have some questions.

I am a 40 year old male. I began with a twitch in my left bicep in early December 2018, but the twitches spread all over my body in just a few days. You name it, and I have twitched there: arms, legs, feet, hands, stomach, neck, face, back, etc. Within a week, I also developed a spot in my ribs where I get momentary tightness that comes and goes rather quickly. I have also had a small cramp or two in my feet and inside of my left elbow over the past 2 months. Occasional muscle jerks in the early morning while lying in bed.

I was fortunate enough to get in to see a neurologist (a family member of a friend) within two weeks of my twitches beginning. I know now from reading the sticky and visiting with the neurologist that twitches alone really don't mean a whole lot. He performed a clinical and found "no red flags," to use his words. No weakness on exam.

At my request, he performed an EMG of my limbs, which came back clean. He did note that I have a postural tremor in my arms and trunk, but did not seem concerned about it. I appreciate the significance of a clean EMG and clinical exam, so I left his office in December feeling good about where things stood.

Since then, I have had additional symptoms that make me concerned about Bulbar onset. Since my doctor's visit, I have noticed that my lower lip quivers/tremors tremendously when I smile. I have had more twitches in my neck, nose, jaw and face, but less twitching in my limbs. But more worrisome, I feel like my voice gets a little raspy after I've been talking for a little while. My job requires me to talk all day, and I've never noticed this before. A colleague mentioned that he noticed it too.

I have also experienced fleeting dull aches/pains in my throat area. (I understand that this generally points away from ALS). Yesterday and today, I have been talking for a period of time and my throat gets a dry and somewhat strained feeling, requiring me to stop talking and have a dry cough or two before I can continue speaking. I'm not congested, and I don't believe that I have a post-nasal drip, although I have been prone to have allergies in the past. I don't have any swallowing or chewing problems, and no one has told me that my words are slurring.

I consulted Dr. Google one too many times and began to get concerned that this may be the beginning of bulbar onset even without the slurring or swallowing problem. Can bulbar onset present in this fashion, where the clinical and EMG were clean 2 months prior? I did not have an EMG of the bulbar region, and the clinical exam seemed to focus on my limbs.

Thanks again for any responses.
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Old 02-21-2019, 04:49 PM #2
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Default Re: Very Concerned about Bulbar

Allergies can come and go. Trying Nasacort and a better lip balm could do no harm. Hydration's importance increases in winter, even in NOLA. But you have to keep your electrolytes balanced, too. Poor sleep can magnify everything. There are simple apps you can use to check yours out.

The clean EMG followed by bulbar twitching migration/ALS onset 2 months later is not something we typically see. Stay off Google and treat symptoms. If you experience any actual inability to do something, I'd start back with your PCP.

Best,
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Old 02-21-2019, 04:50 PM #3
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Default Re: Very Concerned about Bulbar

You've not posted any bulbar symptoms contrary to what you believe. Sore, dry throat points away from ALS. Perhaps try a humidifier at night while you're sleeping. Finally, clean EMG and clinical exam means no ALS.

Good luck to you.
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Old 02-21-2019, 05:35 PM #4
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Default Re: Very Concerned about Bulbar

Thank you for the quick responses! I will do what you suggest. Do you think it would be worthwhile to also revisit with the neurologist to see if he believes that a bulbar EMG is warranted?
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Old 02-21-2019, 07:28 PM #5
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Default Re: Very Concerned about Bulbar

No. People don't have limb-onset ALS ruled out only to find themselves with bulbar ALS. Trust me, we don't talk about lip balm if we think you might have ALS.

You're done here -- a very good thing.
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