fasiculations/pain

[Kimberly]

I have been having fasiculations for about 2 years now.(All over my body)  I have been to a Neurologist several times because of this.  He says benign fasiculations and did not even recommend an EMG.  I still do not feel comforted.  Lately, I have been having pain in my calves and feet, ocassionally my hands.  This really scares me.  I had a baby 5 months ago and soon after the pain started. Also, it seems like the twitches got worse, especially in my legs.  I do not think I have any weakness.  I walk about 3 miles a day and do push-ups and weights to ensure that I still have my strength.  I still fear ALS.  I want to make sure I will be around to raise my baby.  If I've had fasiculations for 2 years would I have experienced weakness by now if it were ALS?  Also, does this pain mean anything?  I'm not sure if its cramping or just pain.  Sometimes my legs feel flu-like. Should I have an EMG?  What could this be?  The fasiculations really scare me.
Thank you for your response.

[CCF Neuro[P] MD, RPS]

Dear Kimberly:

Sorry to hear about your fasciculations.  Fasciculations without muscle weakness is not ALS, and having them for 2 years would have been enough time for muscle weakness to be pronounced at this time.  The parasthesias or pain might be from the fasciculations or something else.  The possibilities are large and it would take many hours to explain each one.  Given that your neurological exam is completely normal and I will assume that your lab work is also completely normal, the most likely explanation is what you have already received.  The remote chances that you have a polyneuropathy are very low given the normal neurological exam and lab work.  The possibility of a metabolic disorder is also extremely low for the very same reason.  The chances of a genetic disorder is also very low as you did not give me a family history or any physical abnormalities in your exam.  

So, I think that you may indeed have benign fasciculations.  As a new mother, lack of sleep and fatigue makes them worse so I can understand your worry about how bad they can be.  I can understand your worry, but you do not have ALS. I hope that your fasciculation will decrease and resolve shortly.

Sincerely,

CCF Neuro MD

[Richard W.]

Kimberly, I can certainly relate to your concerns.  Several years ago I had these faciculations in my calves and convinced myself I had ALS.  After examination I was told I didn't have it and was prescribed Inderal for this condition.  Eventually, I didn't notice it any longer and am doing just fine.  I attribute my condition to a back injury and the nerves being irritated.  I often notice my shoulder twitching repeatedly but don't worry about it any longer. I have some cervical involvement which I believe to be the cause. I think the doctor is exactly right.  I wouldn't worry about it.

[Karen]

Kimberly, even though what the neurologist said above is true about other symptoms appearing by now, go and request an EMG from your neurologist because when that comes back normal (which it will!) you're going to get alot more consolation out of that than from any opinions that you'll hear from people, well-meaning as they are. If he won't give you one then go and find another one that will. You need a neurologist that you feel relaxed enough to tell your fears to, regardless of whether they know that you're fine, you need to be convinced of that in your own mind. Get your blood tested for B12 and magnesium deficiency, bloog sugar (undetected diabetes can sometimes cause neurological sypmtoms) ,calcium - low calcium can result in a condition called 'Tetany' which causes muscle twitching, muscle aches and pains. You need to exclude all the simple things plus all the things which are really worrying you, so get the EMG first. You'll probably be like me though and everything will come back normal which is a relief but very frustrating. Stop reading about ALS symptoms on the internet too. As for the pain associated with the twitching I've had it in those areas and more and I have to say at times I've felt better with a bad case of the flu. I think having a young child puts unbelievable emotional stress on you. At the end of last year when my twitching started I was that worked up about ALS (which I saw a defintion of on the net and wish I hadn't now) I nearly went out and bought my 2 year old daughter a 21st birthday card, thinking I wasn't going to be around in a couple of years. All my tests, EMG etc. have all come back normal, but ocassionally that irrational fear gets back on top of me. In August I went to pay an account at my neurologists office in Melbourne and nobody was there and I saw a leaflet on motor neuron disease which I felt confident enough to pick up and read because I'd had very little twitching and muscle pain in the prior six weeks (don't know why that was either!), anyway a day or two after reading that leaflet twitches and muscle pain came back with a vengeance which seemed very coincidental. There seems to be a alot of us out there, but unless there's a huge epedemic of ALS going around I don't think any of us have it.
                         Karen :)

[Kimberly- To Laurell]

Karen, thanks for your response.  I was wondering, do you have muscle cramping.  If so, where and when?  I feel as if my muscles have been cramping up, mostly at night.  In the morning, I feel fine.  I think its cramping, Its definitely a dull anoying pain.
Thanks!
Kim

[Karen..To Lauren]

I know what mean, I get that exact kind of pain, sometimes in the soles of my feet after I've had twitching there, my hands and my legs too, I used to wonder too if it was cramping. I'm not really sure if it's cramping though. I've had the kind of cramps that everyone gets occasionally in my calf muscle that have you leaping out of bed to straighten your leg, but I've had those kind of cramps on and off since I was 12. I suppose if you have to ask yourself if it's a cramp it's probably not, isn't a cramp a severe contraction of a muscle that leaves you in no doubt as to what it is? I've just had the week from hell with my husbands two daughters from his previous marriage staying with us and my twitching and muscle pain are at a peak at the moment so stress definately has a big part in all this! I've decided I'm going to go to the gym every second day for an hour, firstly to get away from kids for a little while and secondly, if I'm going to have muscle pain and twitching anyway it may as well be warrented! Try not to worry, but go and get an EMG to ease your mind. Even if you are having cramps there's heaps of reasons for this, some as simple as not drinking enough water.

   Karen

[Peanut to ANYONE]

I keep reading that ALS is twitching WITH muscle weakness.  Is the muscle weakness localized or can it be all over your body?  I have twitching all over (eye, below lip, arms, legs, back)for about 2 years now that seems to be getting more frequent and I surely feel weaker than normal.  Everything feels very heavy to me.  My muscles cramp if I hold my baby daughter for more than a minute and I feel so tired that I can sometimes barely lift my arms.  (Granted, I have a 3 yr old and 6 wk old so I'm not getting sleep.)

My question is, is this considered fatigue?  Is muscle weakness specific to one or two limbs usually with ALS or is everything weak?  Would my legs and arms all be weak at the same time?  I'm not tripping or dropping things but I do feel that the grip in both hands is abnormal.

I saw a neuro at the Cleveland Clinic and he said "If it's anything, it's ALS but I really don't think that's what's going on here."  He didn't give me an EMG because I was preg.  I also saw an internist who said I had carpal tunnel but he said I had hyper relfexes!  

Just like you, I'm absolutely terrified of dying and leaving my babies without a mother.  I can't eat, I can't sleep.  I'm at the end of my rope.  

Can anyone offer any encouragement?  Please!!

[Peanut to ANYONE]

I keep reading that ALS is twitching WITH muscle weakness.  Is the muscle weakness localized or can it be all over your body?  I have twitching all over (eye, below lip, arms, legs, back)for about 2 years now that seems to be getting more frequent and I surely feel weaker than normal.  Everything feels very heavy to me.  My muscles cramp if I hold my baby daughter for more than a minute and I feel so tired that I can sometimes barely lift my arms.  (Granted, I have a 3 yr old and 6 wk old so I'm not getting sleep.)

My question is, is this considered fatigue?  Is muscle weakness specific to one or two limbs usually with ALS or is everything weak?  Would my legs and arms all be weak at the same time?  I'm not tripping or dropping things but I do feel that the grip in both hands is abnormal.

I saw a neuro at the Cleveland Clinic and he said "If it's anything, it's ALS but I really don't think that's what's going on here."  He didn't give me an EMG because I was preg.  I also saw an internist who said I had carpal tunnel but he said I had hyper relfexes!  

Just like you, I'm absolutely terrified of dying and leaving my babies without a mother.  I can't eat, I can't sleep.  I'm at the end of my rope.  

Can anyone offer any encouragement?  Please!!

[Kimberly - To Karen]

Karen, I definitely agree that stress makes the twitches worse.  I find that if I do not get enough sleep my twitches and pain increase.  Sometimes, I hate to lay in bed though, because then I can really feel the twitches.  If I'm on my feet all day, then I really don't notice them as much. I am scheduled to see a new Neurologist in October and I will definitely have an EMG for peace of mind.  I know I will be very stressed out before the appointment.  Meanwhile, I'm just going to keep exercising and hope that these twitches will go away.  The back of my thigh just twitched for about 3 seconds.  Its strange because one spot will twitch for a couple of days. I had twithes there yesterday.  Anyway, take care, I hope your twitches calm down.
Kimberly

[Kimberly- To Laurell]

Hi! I can definitely sympathize with your fear.  The twitches are frightening and cause a lot of anxiety because of their association with ALS.  However, twitches can be anything, so try not to worry about ALS.  I would go see a neurologist and have him do a thorough exam.  Maybe an EMG for peace of mind.  I think that your previous neurologist was insensitive to suggest ALS without an EMG.  I would find a new one.
I have a new baby and would be devasted if there was anything wrong with me.  I think I'm o.k. though and I'm sure you are too! Go see a doctor for peace of mind.
Kimberly

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