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JEB1979

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Hello everyone. Just using this thread as a way to vent, so I understand if nobody replies.

Ever since Thursday night, I've had really bad fasciculations on my tongue. I had gotten occasional twitching there, but nothing as bad as this.

Of course, when you start getting these strong twitches and you're in the middle of EMGs and nerve conduction tests, one of the first things you think of is "bulbar onset ALS." But I don't get it. My fasciculations have been in my calves, mostly, and sometimes jump to my knees, buttocks, thighs, hands, neck, arms, feet, etc. (those are never for more than a few minutes, but still strong enough to be noticeable even when I'm wearing clothing and can't see them) I've even gotten them on my face, especially around my mouth. I remember once riding the train and getting a fasciculation on my left cheek that lasted seven or eight minutes. This is the first time fasciculations have been constant for multiple days in another part of my body that aren't my calves, though.

I don't understand why my fascics have suddenly jumped from my legs onto my tongue. Even as I type this, I'm getting strong twitches on my tongue.

I've been taking neurontin at night to relieve the twitching (it hasn't seemed to do much, though), and my doctor prescribed klonopin to calm me down during the day and help me sleep at night (that one has helped, I have a feeling I would be much more freaked out than I am if it weren't for that particular medication.

I'm struck by something my neurologist back in Asia said after inspecting my tongue and failing to find fascics (I wasn't having them there at that point in time). He said "In my experience, I have never seen benign fasciculations of the tongue."

Sorry for the long post. Just worried, and scared.
 

goolia75

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I'm sorry you're having problems. I've been having tongue fasciculations since about June. Some days they go on and on. I also have twitching in the legs, stomach, back, etc, but mostly the arms. I have muscle fatigue, cramps, and spasms. I do not have ALS.

Are you choking on liquids and slurring? It's possible you have something going on neurologically, but it's more likely that tongue fasciculations are a result of BFS when there is no weakness or choking in the bulbar area. I know of people on the BFS forum who have had benign tongue twitches for years and years. It's a muscle, so it can twitch just as easily as any other muscle on your body.
 

JEB1979

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An EMG found sensory-motor neuropathy in my legs (but my arms and tongue were not tested, and the nerve conduction test found no fasciculations even though I have them constantly in my legs, which is...odd). No choking or slurring of words, at least not so far, thank God.
 

slimva

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I don't think a nerve conduction test will detect fasiculations, it just monitors the response time of the nerve being tested
 

JEB1979

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I don't think a nerve conduction test will detect fasiculations, it just monitors the response time of the nerve being tested

That's the EMG, I think. The nerve conduction test is supposed to detect fasciculations.
 

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Sure, many neurologists have never seen benign tongue fasciculations because it not that common as calves fasciculations and also people who get them do not usually get them all the time so the neuros have no chance to see them.
I ahve had them for more than 3 years, on and off.
 

slimva

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Jeb, are you sure? I had the NCV exam first and that's when the Dr found entrapment at the ulnar nerve in both arms. I then had an EMG and it was clean because there were no fasiculations
 

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Slimva you are right. The EMG is where they find or don't find fasciculations
 

Bliz

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EMG is considered clean with or without presence of fasciculations. Fasciculations alone are not signifficant unless there are no associated findings (positive sharp waves, giant MUPs, fibrillations...).
If you have fasciculations, then EMG would spot them if done on the right place in the right time (the needle tip needs to be close enough). But it makes no difference whether or not EMG detected them.
 

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Hi Bliz,
I’m from EU too. Please can you explain me what’s the meaning of giant MUPs in an EMG, please? If you know to read an EMG report, please, can you tell me what’s the meaning of : for Biceps Brachii: ins. act.-normal / fibs. 0 / pos wave 0 / fasc 0 / normal MUP +2 / Poly +1 / Dur –short/ recruit – full / Int. Patt – full. My Doc. conclusion for this muscle is “myogenic modifications in the right biceps”. With this report without too many explanations I left his room, been scheduled for another app in December.
Thanks a lot!
 

JEB1979

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Well, I saw my neurologist yesterday (my doctor sent her a note and got her to move the appointment ahead of time).

Good news is that she did all the physical tests and they were all normal. No hyperreflexia or babinski sign or whatever. The fasciculations in my calves were as active as ever but she didn't see any in my upper body, as those are totally random.

She said my EMG was apparently not very well done, or as she put it "the information on this EMG is useless to me." She referred me to a neurologist who specializes in EMGs, she said she's the best on the island as far as performing EMGs goes. Unfortunately, this doctor is not free until December, so I have to wait yet another month.

She ordered more bloodwork done for me. My B12 levels were low, but she said they weren't low enough to cause neuropathy or any of my other symptoms.

She said ALS is a definite possibility, considering my family history, but it could also be a bunch of other things, and that she needs more testing to see why I have fascics but not noticeable atrophy or weakness.

No answers. Back to square one.

Preoccupying to me is that I've developed something at the back of my throat, I constantly have to be clearing it, feels like there's something stuck at the back of my throat, like the beginning of a cold, but not quite the same.
 

JEB1979

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The clearing of the throat has just gotten worse and more constant since I wrote my last message. I checked to see if it could be a side-effect of any of the medications I'm taking, but it seems not to be the case.

Just worried.
 

ANDMON

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Hi there,
I don’t want to be mean, but I experience the same symptoms like you and I’m very scared and I can tell you for sure that I had times when “the clearing of the throat “was just created by my mind. I observed it a few times when I was very anxious and very, very scared. I couldn't clean my throat and I had lots of saliva. I told myself “another sign of ALS”. I posted before a few questions and some wonderful people from this forum made me understand that being scared is not helping me or the doctors to diagnosed me( and eventually to help me). So, I try (which is really hard) to control myself and the things are little bit better.
All the best, Marcia
 

JEB1979

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I've been having throat clearing issues for about two weeks now, tongue fasciculations started about a month ago. Coincidence? I don't know. I always thought that if your fasciculations were in your legs and arms, that meant limb onset, but after searching this forum, I read about instances of bulbar onset cases that had fasciculations in the limbs first, then throat and voice issues.
 
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