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jasper

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Jan 23, 2012
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Learn about ALS
Country
CA
State
Ontario
City
Mississauga
I've read some reputable online literature about ALS and most of this section of the ALS forum and still can't find a definitive answer to my concern. I'm hoping you'll take a moment to set me straight or point me to a good resource.

I've had an intermittent twitch under my left eye since March of last year. By summer, it was constant, so I visited my GP about it in September. We raised my calcium and magnesium intake, but the twitch persisted, so she set me up with a neurology appointment because she was concerned I might have a more serious neurological problem. That appointment is scheduled for March.

Since then, I've developed a twitch in my left cheek when I smile. Other facial muscles twitch intermittently as well, and sometimes there is tongue involvement. Stress exacerbates the problem, but even when I'm completely calm, my left cheek still twitches like a weak muscle upon smiling. The good news is that the eye twitch is intermittent again, but I've given up caffeine, so I'm sure that accounts for it.

Yes, my doctor is concerned the eye twitch might be a sign of ALS. Yes, she said as much, though she was careful to add that she doesn't think I have it, and she's 99.9% sure of that assessment. No, I don't have any trouble slurring (we all slur on occasion, but I'm not slurring often or consistently), chewing or swallowing. No, I have no weakness in my limbs.

Here are my questions, then. Are eye twitches, cheek twitches, facial twitches or tongue twitches an early sign of the disease? Could the twitch in my cheek upon smiling be an indication of a weak facial muscle and thus worrisome?

Yes, I'm worried, but I'm handling it, twitches aside, and I'd genuinely appreciate a solid answer on this, even if it's harsh. I respect that many people come to this forum with the 'twitch' question, but because my doctor has a concern (however minor) and because I might have a weak cheek muscle, I thought I would ask you all about it.

Thank you for whatever help you might provide.
 
My advice is to double check your Dr's credentials...if I am understanding you correctly your Dr. based on an eye twitch became concerned it may be ALS and expressed this concern to you? Surely to do so you have some clinical weakness, perhaps a clean MRI and abnormal emg, clean blood tests, atrophy, other symptoms that indicate ALS is remotely a possibility?

From what you wrote you have no need to fear ALS but you do need a new Dr. Just one man's non expert opinion.
 
I agree with TedH5 -- your PCP did you no favor by telling you that your facial twitching might be a sign of ALS. I don't know how your health care works up there, but I'd get away from Doctor Doomsayer as quickly as I could find a new doctor.

In the meantime, try to keep yourself calm until your neuro appointment. You've already seen what happens to your twitching when your stress level goes up.

And, no, your symptoms don't sound anything like ALS to me.
 
My sister suffers from hemi-blasphagia, often times called Meig's syndrome, but no doesn't sound like ALS. Good luck and move away from the keyboard (that's the best advice anyone can give you).
 
Thank you all for your kind responses; I'm tremendously grateful to you.

TedH5: You have the right of it. My doctor, based on an eye twitch alone, set me up with a neurology appointment because she was concerned I might have a more serious neurological disorder, and I was placed on a long waiting list. When I questioned her about the neurological disorder she thought I might have, she mentioned ALS but quickly added that she didn't think I had it and just wanted to be sure. An in-office physio exam did not reveal any limb weakness in September of last year, and my blood work only showed a mild calcium deficiency and a mild electrolyte imbalance. I've had no MRI and no EMG, though you may well believe I'm looking forward to them.

Since then I haven't suddenly begun to stumble or drop anything, and my limbs feel like forty-something limbs, with the usual aches and pains. This evening some colleagues in a meeting thought I had said the word 'trek' instead of 'chart', and last week a checkout teller at Staples asked me to repeat myself, but my family hasn't noticed any odd/consistent changes in my speech or vocal tones. I was worried for awhile that I might be slurring my 's' words, but my family and I listened to an old recording of my voice and then to me as I repeated it, and none of us noticed a difference.

I scoured this forum and every reliable medical resource I could find on the eye and facial twitch/ALS issue and only found a few anecdotal posts here to support the idea that they might be related (and one was from a woman who said outright that her eye twitch was probably the result of stress and not a progression of her disease). I just couldn't wrap my head around the idea that my doctor would send me to a neurologist over an eye twitch alone, fearing it was a disease with a very specific pathology she wasn't seeing in me.

So yes, I've been doing strength exercises and listening to my voice since September, and every time I slur a word or fumble a tool in the garage I wonder 'is this a sign'? Yes, I've been down that road so many frightened people are on when they come here, and yes, I've resolved to wait for my neurologist's examination without doing any more research than I already have. In the meantime, prayer and meditation help, and my family is loving me through the wait.

Thank you again for condescending to post your thoughts on an issue already so over-worked on this forum. I'm very grateful to you all.
 
It could possibly be myokymia, which is very common in muscles around the eyes. Neurologists can treat it with bottom if it is really troubling. So seeing a neurologist is a good idea. I agree with the others it's unprofessional of your doctor to mention something like ALS with just some minor twitches, a bit like telling you you have lung cancer because you cough once.
Best wishes for your appointment
 
Aly, you did mean BOTOX, right? Or a swift kick in the bum?
 
Darn, missed that one. Last time I tried to write BOTOX, it put in bottom. Ha ha, well spotted Dorothy. ( found the ruby slippers)

Apologies Jasper, blame it on Apple! And Mt bad ability to proof read my posts
 
Jasper
I understand your predicament, but from what you have posted you really need not be concerned about ALS. I know that once the physician mentions ALS, Pandora's Box is open and the fear can't be ignored. Believe me, if your GP knew anything about ALS, she would not have opened her mouth at this stage. I also understand that every trip, stumble, dropped cutlery or misheard comment is an OMG moment. Believe me I am more concerned about my wife going deaf than me slurring - I can still hear and so can you. Try a couple of "red lorry, yellow lorry" repeats and waggle your tongue around your mouth to incease your confidence here. The only point at which you need to become concerned is when you genuinely experience weakness. I would characterise this by not being able to do something that you used to be able to easliy. Remember we are all getting older so I'm not talking about benching 200 lbs. I'm talking about struggling to turn a key in a lock or a car ignition, being able to lift a foot over a step, still being able to sign your name or toss a coin. Until you are in that space, be happy...
Kitchener
 
Alyoop: No bother at all! Never let it be said though, that I couldn't use a swift kick from time to time... And I'm in agreement that I've probably got a bit of persistent myokymia. After I know for certain that's all I'm dealing with, I'll get it treated right away.

Kitchener: Would you believe my doctor told me that a family friend of hers died of ALS? You would think she'd know more about the disease from experience, let alone training. I'm baffled. But thank you for the 'red lorry, yellow lorry'. My tongue moves freely around my mouth behind all my teeth, and your tongue twister comes out just fine.

I've decided to see the diagnostic process through with my current doctor and then seek a new GP afterward. I don't want to upset the apple cart, but I confess I think it's irresponsible to create such anxiety in a patient over such a minor ailment. I'll be sure and post an update in this thread once I have a definite diagnosis. It's possible we're all wrong and this is some bizarre first manifestation of the disease, but I sincerely doubt it, and the combined knowledge of this forum and its posters is far greater than mine. Thank you again.
 
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