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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


[QUOTE=blues1986;4100857]These are not the symptoms of ALS. Muscle spasms and cramps are not associated with ALS. As for your twitching, that is the most misconstrued myth about ALS. If you have twitching, it points AWAY from ALS. Those who do have the disease get a "wave" type of muscle twitch that is non stop forever. It comes well AFTER you notice the muscle atrophy. I know for a FACT you do not have ALS.[/QUOTE]


Is this true? Because I have fasciculations and muscle weakness and my neurologist just sent me to see an ALS specialist. He said he doesn't think its ALS but wants to rule it out. He says sometimes one can have fasciculations before they notice any muscle weakness or atrophy.

My fascics started in February, and I'm just noticing the muscle weakness now. Does this sound like ALS? I had a EMG that was negative except for the fasciculations in early September, so I thought I was in the clear, but now I am nervous again. The muscle weakness I have noticed only started about 1 month ago but seems to be progressing.
[QUOTE=Thnder;4126369]Is this true? Because I have fasciculations and muscle weakness and my neurologist just sent me to see an ALS specialist. He said he doesn't think its ALS but wants to rule it out. He says sometimes one can have fasciculations before they notice any muscle weakness or atrophy.

My fascics started in February, and I'm just noticing the muscle weakness now. Does this sound like ALS? I had a EMG that was negative except for the fasciculations in early September, so I thought I was in the clear, but now I am nervous again. The muscle weakness I have noticed only started about 1 month ago but seems to be progressing.[/QUOTE]

Can I ask how old you are?

When we added muscle weakness to muscle twitching, it becomes a whole new ball game....but what your doctor is describing is SO RARE. Only about 5,000 people get ALS each year, and only a few of those, if any, will start with their first symptom as twitching. Muscle weakness can be caused by so many different reasons. Your doctor just wants to rule out ALS first.
Blues, I am 39 years old. My fascics started in my upper body but now they are in my calves. The fasciculations in my calves are different than my upper body fascics. My calves sort of move like worms moving under the skin--they are slight and barely noticable, whereas my arms are more noticiable and do it less but more strongly than my calves. I have weakness in my left wrist and elbow and right shoulder, and I think now in my ankles. I also have a few fasciculations in my buttocks and left pectoral. However, I also have pain in the joint areas where the fasciculations occur (although the fascics don't cause pain), which I understand is not a sign of ALS. Is that correct? (But I also heard the joint can slip as the muscle weakens, which could cause pain?) When I press on the joint area or move it wrong it sends a flare of pain. I've had a cervical MRI and then later a lumbar MRI, both of which didn't show anything that would cause the fasciculations.
There was a few skillets piled up on the oven, and although I could lift it with my right arm, it wouldn't budge with my left arm. Also, I just moved a couch with a friend, and it seemed like my left arm didn't have anything to give.
Also, when I chew something thick it seems like my jaw begins to tire out. I know that this is not the normal ALS progression (weakness coming after fascics), which makes me calmer, but I simply can't figure out what it might be. I've had a negative lyme test but I also understand chronic lyme can be unreliable in tests.
I apologize, as my concerns are so minor compared to the challenges many face here everyday.
[QUOTE=onesearedsoul;4100616]Im new here, checking out info thats being shared. I currently have three of the four main symptoms of ALS that I know of, fasculations, that started about two years ago, cramps and muscle spasms that started about a year ago, no antrophy at this point that I can confirm, although I have noticed loss of stamina in the use of my left arm and left leg.

What I am seeking, if anyone is able to tell me, if they have seen or heard anything like what I am about to describe.

I am having instances where I have an itch or minor parathesis at one spot, and when I scratch or rub it, it causes a sensation simular to the original one at another spot. I then have to scratch or rub that spot to resolve the original itch or sensation. I would presume that this may be occuring due to neural signal jumping.

(PS I am also former military.)[/QUOTE]

The weakness does sound like ALS but it traditional doesn't hit all the limbs at once. It normally does its damage one limb at a time. Also you are on the young age for the disease.
[QUOTE=Thnder;4126823]Blues, I am 39 years old. My fascics started in my upper body but now they are in my calves. The fasciculations in my calves are different than my upper body fascics. My calves sort of move like worms moving under the skin--they are slight and barely noticable, whereas my arms are more noticiable and do it less but more strongly than my calves. I have weakness in my left wrist and elbow and right shoulder, and I think now in my ankles. I also have a few fasciculations in my buttocks and left pectoral. However, I also have pain in the joint areas where the fasciculations occur (although the fascics don't cause pain), which I understand is not a sign of ALS. Is that correct? (But I also heard the joint can slip as the muscle weakens, which could cause pain?) When I press on the joint area or move it wrong it sends a flare of pain. I've had a cervical MRI and then later a lumbar MRI, both of which didn't show anything that would cause the fasciculations.
There was a few skillets piled up on the oven, and although I could lift it with my right arm, it wouldn't budge with my left arm. Also, I just moved a couch with a friend, and it seemed like my left arm didn't have anything to give.
Also, when I chew something thick it seems like my jaw begins to tire out. I know that this is not the normal ALS progression (weakness coming after fascics), which makes me calmer, but I simply can't figure out what it might be. I've had a negative lyme test but I also understand chronic lyme can be unreliable in tests.
I apologize, as my concerns are so minor compared to the challenges many face here everyday.[/QUOTE]
hello how are you doing.I am new to this forum too. i recently read your post and i seem to have what you have described.I have twitching especially on my calves since april of this year 2009.and I also have severe back spasms too. I too am afraid and thinking i might have ALS.I was wondering is it possible for a person to develop twitching and spasm before weakness and atrophy.my doctor had done numerous of tests on me and all of it came back negative which only make me suspected more of a possible ALS.I am worried and confused.if you have been diagnoised or have any new symptoms going on can you please keep me informed.I would like to hear from you.thank you very much. hannah.
[QUOTE=shinnie;4130204]hello how are you doing.I am new to this forum too. i recently read your post and i seem to have what you have described.I have twitching especially on my calves since april of this year 2009.and I also have severe back spasms too. I too am afraid and thinking i might have ALS.I was wondering is it possible for a person to develop twitching and spasm before weakness and atrophy.my doctor had done numerous of tests on me and all of it came back negative which only make me suspected more of a possible ALS.I am worried and confused.if you have been diagnoised or have any new symptoms going on can you please keep me informed.I would like to hear from you.thank you very much. hannah.[/QUOTE]


Hi Shinnie,

I have looked a lot into ALS because of my symptoms, and generally, the twitching comes after the muscle weakness. Also, spasm are not a sign of ALS. there is a condition called Benign Fasciculations Syndrome that is much more common than ALS, which is very rare.
I returned back from the neurologist, and she does not think its ALS that I have, although she can't rule it out. She is testing for a wide range of disorders, including lyme and other tick born diseases, plus anti-neuronal antibodies (?) while also looking into multifocal motor neuropathy and myasthenia gravis (which typically doesn't present with twitching but she did notice my right eye drooping more than my left).
She is very thorough, and order over 25 different blood tests plus an emg which I am taking on Dec. 10th.
Because of my reflexes and fasciculations (which she saw) and muscle weakness, which she tested, she is one of the few doctors that is finally taking this seriously, after being poo-pooed by the family doctor for awhile. The neurologist is where you want to go. Family doctors I realize don't know crap about the nervous system.

Best of luck to you, and I am certain you'll be fine. Let me know how things go.





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