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Neurology (Expert Forum)
Continued Fears of ALS. Need Clarifications
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Continued Fears of ALS. Need Clarifications
by Nervous Guy, Nov 07, 2006 12:00AM
I am confused by all the postings and opinions of wonderfully supportive lay-people and I continue to worry re ALS. I respectfully hope that a NEURO DOC can answer this. My fasciculations seemed to be calming down until I awoke from deep sleep with wild fascics in one quad that stopped as soon as I engaged muscle and started again when I relaxed it. This happened several times before calming down. I also have motion pain in knee just below fasics.
1) Is it true that fasciculation by definition are twitches that can be SEEN and not simply felt under the skin, the latter being more likely to be just stress, anxiety, fatigue or hyper vigilance? Mine tend to calm down with Xanax.
2) I have read on these pages that ALS related twitching is profound, occurring as often as 30 per minute and that 4-6 small twitches per day is common and unlikely to be related to progressive neuromuscular illness. True? Doc told me that if ALS related, fascics get progressively worse, 24 hours a day, and not come and go. I haven’t seen much change for about a month.
3) I have also read that twitching that occurs only at rest is benign and will stop as soon as a muscle is engaged whereas neuropathy related twitching occurs at rest or in motion. Mine almost always occur only when lying down and relaxed. True?
4) Any credence to an ALS/statin connection?
Neuro exam found no wasting or objective weakness and told no need for EMG. Told by doc that fascics and cramping are a later stage of ALS symptoms and ALWAYS occur AFTER wasting and weakness presents, not an early sign of ALS. I am fatigued but no evidence of weakness or wasting. I have no problem gaining weight! Just confirming but still frightened, in spite of how rare ALS is. Shaking from fear now.
1) Is it true that fasciculation by definition are twitches that can be SEEN and not simply felt under the skin, the latter being more likely to be just stress, anxiety, fatigue or hyper vigilance? Mine tend to calm down with Xanax.
2) I have read on these pages that ALS related twitching is profound, occurring as often as 30 per minute and that 4-6 small twitches per day is common and unlikely to be related to progressive neuromuscular illness. True? Doc told me that if ALS related, fascics get progressively worse, 24 hours a day, and not come and go. I haven’t seen much change for about a month.
3) I have also read that twitching that occurs only at rest is benign and will stop as soon as a muscle is engaged whereas neuropathy related twitching occurs at rest or in motion. Mine almost always occur only when lying down and relaxed. True?
4) Any credence to an ALS/statin connection?
Neuro exam found no wasting or objective weakness and told no need for EMG. Told by doc that fascics and cramping are a later stage of ALS symptoms and ALWAYS occur AFTER wasting and weakness presents, not an early sign of ALS. I am fatigued but no evidence of weakness or wasting. I have no problem gaining weight! Just confirming but still frightened, in spite of how rare ALS is. Shaking from fear now.
Doctor's Answer
by CCF-Neuro-M.D.-SH, Nov 14, 2006 12:00AM
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
1)False, fasiculations are small twitches that occur in muscles without causing movement across joints. These twitches can be seen or unseen. Fasiculations can occur in normal people, are more apparent to the anxious, occur with exercise, after a viral infection, metabolic disorders and rarely in neuromuscular diseases including ALS. Fasicualtions that improve with Xanax is not consistent with ALS.
2)Not necessarily true, but the theme is right. Benign fasicualtions tend to be rare, spread out over the body and tend not to be progressive. In neuromuscular disease, fasiculations are more likely to be localized, more frequent and occur non-stop. That being said, locailized fasiculation and/or progressively worsening fasiculations are NOT diagnositic of ALS (which is only made by EMG and the clinical picture of weakness and atrophy).
3)Fasiculations can occur at any time, and different time do not correlate with disease vs benign.
4)No
I would suggest an EMG for anyone with fasiculations and anxiety about ALS or other neuromuscular disease. There is no better way to say "you are going to be fine" than by actually having data to that fact. I would go to a neurologist and have the EMG done then work on relaxing.
I hope this has been helpful.
1)False, fasiculations are small twitches that occur in muscles without causing movement across joints. These twitches can be seen or unseen. Fasiculations can occur in normal people, are more apparent to the anxious, occur with exercise, after a viral infection, metabolic disorders and rarely in neuromuscular diseases including ALS. Fasicualtions that improve with Xanax is not consistent with ALS.
2)Not necessarily true, but the theme is right. Benign fasicualtions tend to be rare, spread out over the body and tend not to be progressive. In neuromuscular disease, fasiculations are more likely to be localized, more frequent and occur non-stop. That being said, locailized fasiculation and/or progressively worsening fasiculations are NOT diagnositic of ALS (which is only made by EMG and the clinical picture of weakness and atrophy).
3)Fasiculations can occur at any time, and different time do not correlate with disease vs benign.
4)No
I would suggest an EMG for anyone with fasiculations and anxiety about ALS or other neuromuscular disease. There is no better way to say "you are going to be fine" than by actually having data to that fact. I would go to a neurologist and have the EMG done then work on relaxing.
I hope this has been helpful.
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Has your figure changed? Are you severely fatigued? How do you feel? Can you even make it through the day without feeling like your just going to fall over?
I'm in the same boat as you. I've been to the best in Houston, had a full EMG workup done and told i DO NOT have ALS, however, i feel like i've been run over with a freight train and can see changes, hopefully they are in my head. If you are not seeing changes, i wouldn't worry. You would also feel changes.
Also, the more you read this website, as good as it is, the more it will scare you. I'm there and feeling worse by the day.
Nervous guy, you, me, this guy Jeffro and many other people are in the same boat. You need to find the closest big city near you, call the MDA and find out the leading clinic. Call and make yourself an appointment or just walk in and give the receptionist your symptoms, be persistent.
Also, i'm now seeing an internist after seeing 3 neuros. With all due respect, he stated that most Neuros won't make any diagnosis without objective changes, so really, if you don't notice changes, you are unlikely to get any answers. You may want to seek the advise of a good internist, as this was recommended by the leading Neuro i saw.
Rgds
Look at the bright side of things, MS (these days) is a treatable disease. Go the the nearest major medical facility and get a complete workup.
I can feel your pain, you are at a point right now where you cannot wait, but i don't think you will really get much different answers that you have already read here. I've been through it.
Good luck guy!
I've gone through nearly 5 years of hardcore muscle stiffness, tingly weakness sensations, massive twitches all over body to where even others noticed, and I am still here. And this stuff was BIGTIME.
My symptoms all of the sudden decreased dramatically a few weeks ago once a mental stressor was taken out of the picture unexpectantly. And I didn't even know this thing had been stressing me out behind the scenes, as it was something I really enjoyed. Go figure.
I don't think the docs these days realize yet just how much your brain can create or instigate these symptoms. I am talking neurological stuff here (not the if you believe you got burned, your body will actually make a blister mumbo-jumbo). You may get twitches and stiffness (which IS not all that rare), then realize some tragic diseases can start out this way (coincidentally). Then your mind takes over, anxiety increases, and so do the symptoms, including new ones.
Fortunately, there are objective tests for these tragic diseases. Get yourself checked out by a qualified specialist (or two). If they both say you don't have the disease you think you have, especially after objective tests, go ahead and take their word that you don't have these diseases. Thats the best science has for now.
Sure, you may still have your symptoms, but you have a 99.999% chance its not a tragic disease if you've been checked out thoroughly by a specialist.