What Is ALS's 'Mystery Phase'?

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It can't be a tremor. a tremor involves the whole surface of the tongue. This is twitches in sinlge spots. I have gone days without noticing any at all though.
 
Not really, contraction-induced tremor can affect as few as one motor unit - you can see it when flexing your tongue very gently as you will see certain spots to twitch. Even if was fasciculaion, you said you can go days without noticing any. That would not happen with lower motor neuron lesion. There would be present all the time (sometimes less, sometimes more) but they would not go away.
 
Help me with this please? I have an appt. with my neuro in a week, and in 2 weeks I have a EMG. I'm so nervous. On one hand I'm scared they'll find something, on the other I'm scared I won't be able to relax even if they don't.It's been 6 months since I started having fasciculations on my tongue. Is that enough? I read somewhere you're suppoused to wait 8 months. If the EMG and clinical is clear, is it safe to let this go then?I really need suppourt right now. I'm so scared I don't even know if I can go through with it. Oh, and I'm starting an internship at a neurology unit next week. The irony.
 
I need help. I've tried to drink liquid and blow my nose several times, and nothing showes. However, after I've been drinking coffee and I "sniff" with my nose, I can feel something running back in my mouth. If I spit it out it's brown (or some other color if I've been drinking something else). Is this normal? It means some of the liquid does enter my nose.
 
if you spit after drinking coffee, it is normal that there is some coffee in your throat and it does not mean you have weak soft palate.
 
I think an ENT consult may ease your mind even more than an EMG. Like others have said, they can closely inspect everything and will find any abnormalities. I had this panicking fear, btw, 6 years ago. Lost 40 lbs. convincing myself I couldn't swallow.I had a globus sensation & had a swallow study done. Perfectly normal except a delay of swallowing the bolus to begin with, which was anxiety-driven. Really, this all sounds so familiar to me. Anxiety. Also had tongue fasics on the left side. Still do, 6 yrs later if I look really hard for them. The best advice I ever received was from a doc at a MND clinic. She told me to stop looking. Even brushing my teeth, just close my eyes. That really helped break the OCD cycle.Hang in there!
 
Thank you, very good post. I went to my neuro yesterday for a check up. He checked my jaw jerk and it was not brisk at all. He didn't see any fasciculations either. He's sending my for an EMG next week. If that EMG is clean, surely I can relax then? It's 6 months after fasciculation onset. I read somewhere that bulbar sometimes doesn't show on an EMG. I read it in a paper called Mimics and cameleonts in MND. I'm sure I missunderstood it somehow, but could someone explain?
 
The bulbar might not show up on the EMG if it is performed on the limbs only, of course. Bulbar muscles are innervated through cranial nerves and hence you would need to sample a muscle from this group (typically the tongue) to check if there is a damage in this area. But usually by the time a patient has bulbar symptoms, there is at least electrophysiological evidence of the disease in muscles innervated by nerves coming from the cervical spine. Patients with bulbar onset often has findings in deltoid and trapezius muscles.So yes, with clean EMG, you can certainly rest. But you can rest by now already, all the issues you presented so far were just in your head (remember sending me the pictures of your soft palate, which was perfectly normal despite your perception?).
 
Further, that paper you point out also states that twitching by those younger than 45 years of age is typically benign. You seem to incline to pointing to evidence that does little to help your anxiety.
 
Hear, hear! Joycecaroll, you really need to stop this obsession, it's paralyzing you. I know it's hard, but just try to focus on real facts. Please read and reread what an MND specialist said to Bart about his concerns for bulbar (). Also, all neuromuscular specialists I visited said the same thing, so there is nothing you should be afraid of.
 
Had EMG and nerve conduction test today. He did my leg, arm, hand, trapzius and tounge. Nothing weird showed up. This is 6-7 months after fasciculation onset. Am I in the clear now? I wan't to let this go.I still have minor swallowing problems. The feeling of liquid coming up my nose. Nothing shows if I blow my nose after swallowing, but if I sniss my nose it comes down my mouth. For example, if I've been drinking orange juice and sniff my nose and spit a while after, it will be orange. Anyway. Clean EMG, no jaw jerk, can blow up my cheeks etc. Am I in the clear?And PS: I'm really a wreck at this point, so please dn't say anything that will cause more doubt. It would just help to hear from someone that I'm out of the woods now, that's all I wan't to hear.
 
you seemed to be checked in all critical areas, including tongue. Considering 7 months period, I personally think you could consider yourself cleared.
 
Joyce, there is nothing we can do for you. Only professional counselling/medication maybe - you were just cleared by the EMG, which would detect signs of the disease before they manifest clinically.As for your PM - UMN would be clearly seen during the clinical exam.Let this go, you are wasting your life. Now there is nothing that could reassure you more.
 
From my understanding, left, right tongue movement would appear as if the tongue was doing its own thing and not what you are intending for it to do, even if subtly. Slowness, upward tip curling, even pain when pertruding can manifest.
 
I read somewhere that Dr. Eisen think's that after 8 months, if there's no clinical signs, than it's not ALS. For me it's been about 6-7 months, so I'm thinking what if UMN signs show up in the next month etc etc etc. So that's why I'm wondering. Really, I can't believe I'm not feeling better after this EMG. I know I have OCD, but I'm really good at fooling my self. I really thought I would have let this go by now.
 
I'm not sure if this will reduce your anxiety, but anyway: 1. You just had a clean clinical and a clean EMG after 6-7 months of (possible) fasciculations. When I say possible, I am not sure if they were confirmed by your neurologist?2. To develop LMN signs after a clean EMG it would take (at least) several months.3. Eisen said that, from his experience, if after 8 months there are no other clinical signs, then it is not ALS.Conclusion: The probability that you have ALS is negligible. Or, to put it simply: You don't have ALS!!!
 
EMG is not a treatment procedure, and OCD could not be treated with any reasonable evidences.OCD needs change of pathways in the brain, and this needs medication and counseling, not EMG etc.
 
Oh I know Yulia. I would just love it if someone wanted to explain the thread I posted earlier. About 14% of patients having clean emg and clinical and still having als. Is this something I should worry about? Someone please just explain and then I'lI leave the forum and stop obsessing.
 

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