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Continued Fears of ALS. Need Clarifications
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
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
Hang in there Nervous 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.
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.
Again, many thanks. I look forward to changing that name as well!
Thanks. How wonderful to know that people we have never met and probably never will can have such a calming and supportive affect on each other. Your posting made me feel very good and grateful. Funny how we can help each other and yet it is so hard to help ourselves. I'm going to try to calm down without the EMG since I wouldn't even know where to begin with all the areas that twitch. If I can't, I still have that option open. Again, many, many thanks and peace.
Thank you so much for your response. One last question: When you say "Benign fasicualtions tend to be rare," I assume you mean in frequency of occurance within an individual. You don't mean that benign fascics are rare in general do you? I would think that they are much, much more common than those related to neuro-muscular disease. Thanks again.
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.
LIPITOR! For years. Went off them about a week ago and fascics seem to have gotten worse. Doc says it take about a month to clean out.
I see it worked!! Hope you get some answers that will help. What time was it when you posted??
9:15 ET. I started at 7 and checked every 15 minutes. Do the Docs generally respond? Thanks Jenny.
LIPITOR! For years. Just went off it last week. Doc says takes about a month to clear out.
Jenny,
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.
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.
You will get your response and they will email you when they respond. Calm down, go get some Xanax, it will help. I am almost sure if you don't "feel" the disease, you don't have it.
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 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!
Many, many thanks. I think I know what you mean when you say "feel" the disease. I guess if someone is really sick, they know it. Other than the twitches that clearly get worse with anxiety, I'm really fine. Thanks again and wishes of peace to all of us "worried well."
Were you on Statins, like Advicor or Lipitor? I was and it seemed to trigger this
Thanks pal. I feel like such an idiot. No physical changes. Just tired as hell, probably from all the anxiety. Having full internist check-up next month.
Nervous Guy,
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
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
Yes, they will respond, sometimes though it takes a while, if you look at the posts, some are answered within just a few days, and sometimes I have seen it take as long as 10-12 days. Hang in there!! I'm glad you got to post, you seem very concerned, I am in the same position as you, the more you think about it, the worse the symptoms get. I have had twitches before, but it was usually a side effect of either the Prozac that I took, or just recently buspar. I'm in the processes of trying to get on another AD, my life is true hell right now, and I need to get my scare taken away, of course, mines not ALS, its "MS". Good Luck, and take care!!!
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