ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 09-04-2013, 06:41 PM #1
ffhogg ffhogg is offline
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Confused Diagnosed with possible ALS but no weakness

I am 30 years old and 5 months ago I recieved a diagnoses (first of 3 opinions) of possible ALS due to muscle fasciculations all over and spasms primarily in left hand. My symptoms have not changed much since then. Recent EMG at Mayo clinic indicated diffuse fasciculations and diffuse mild neurogenic changes in all tested upper and lower extremity muscles but no fibrillation potentials. EMG previously performed had shown minimal chronic neurogenic changes only in the left deltoid and biceps. I have not observed any weakness or atrophy. No abnormalities in lab work or MRI. Is this ALS, BFS, or something else? Looking for some insight. Thanks
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Old 09-05-2013, 03:42 PM #2
Benz7524 Benz7524 is offline
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Originally Posted by ffhogg View Post
I am 30 years old and 5 months ago I recieved a diagnoses (first of 3 opinions) of possible ALS due to muscle fasciculations all over and spasms primarily in left hand. My symptoms have not changed much since then. Recent EMG at Mayo clinic indicated diffuse fasciculations and diffuse mild neurogenic changes in all tested upper and lower extremity muscles but no fibrillation potentials. EMG previously performed had shown minimal chronic neurogenic changes only in the left deltoid and biceps. I have not observed any weakness or atrophy. No abnormalities in lab work or MRI. Is this ALS, BFS, or something else? Looking for some insight. Thanks
Hey, I'm 31 years old and just started having a twitch in my middle finger but not really any weakness either. I'm nervous about possible ALS, and not sure what the weakness feels like. The hand that is twitching feels like I have pain in my wrist and tendon when trying to lift things or make a trigger like motion that makes me weaker but it isn't due to not having the strength, it's more about the pain making it more difficult. Have you experienced anything like that? Also, when you say spasms, what do they look like, is it just a finger twitching?

Wish you the best of luck. Thanks
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Old 09-07-2013, 12:04 PM #3
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Hey, I'm 31 years old and just started having a twitch in my middle finger but not really any weakness either. I'm nervous about possible ALS, and not sure what the weakness feels like. The hand that is twitching feels like I have pain in my wrist and tendon when trying to lift things or make a trigger like motion that makes me weaker but it isn't due to not having the strength, it's more about the pain making it more difficult. Have you experienced anything like that? Also, when you say spasms, what do they look like, is it just a finger twitching?

Wish you the best of luck. Thanks
Have you seen a neurologist yet? If so, what's your diagnosis? I also have the pain in the left wrist while lifting. The spasm I am referring to are contractions in the left hand and arm , "Charlie horse", making it difficult to move them. Only last a few seconds.
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Old 09-07-2013, 06:52 PM #4
jenng jenng is offline
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Default Hi!

So one of your opinions is from Mayo/an ALS specialist? I only ask since they generally don't throw out the diagnosis lightly. Without weakness or muscle wasting they are unlikely to say that's even probable. Chronic denervation in a muscle isn't ALS--it needs to be active at the time of EMG. Fasciculations that are widespread without weakness or wasting sounds more like BFS. You may have chronic muscle denervation from peripheral neuropathy, but without weakness even that sounds unlikely. How is your back? Have you had an MRI?
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Idiopathic Sensorimotor Polyneuropathy
Atypical Migraine
Chiari 1 malformation 7 mm
PLIF L5-S1 Sept. 2013

Lumbar MRI March 2013: degenerative changes from L3 to S1. L3 and L4 have tiny annular tears with disc bulge. L5-S1 bilateral pars defects anterolisthesis (spondylosis/spondylithesis?) I have an annular tear here too, along with a conjoined left L5-S1 nerve root. Mild effacement of the thecal sac at the origins of the bilateral S1 nerve roots, left greater than right. Mild bilateral Neural foraminal stenosis.
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Old 09-07-2013, 09:12 PM #5
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Thanks jenng for your input. Yes, I met with an ALS specialist at Mayo that diagnosed with me POSSIBLE ALS. Diagnosis was based on the muscle twitching and asymetrical reflexes (brisker on left side). They also stated the results of my EMG were not consistant with ALS, but future EMG's might assist with a more solid diagnosis.

I am curious as to why they did not mention BFS as a possibilty. University of Chicago hospital stated that due to the chronic nuerogenic changes noted in EMG it is a concern for ALS. However, Mayo did not observe these findings in their EMG. How accurate are these EMG's? I've had two MRI's of head and neck with and without contrast- no abnormalities. The asymetrical reflexes are a concern for me because this symptom is consistant with ALS. Thanks
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Old 09-08-2013, 01:23 AM #6
jenng jenng is offline
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As far as accuracy of EMG's, I would recommend that your follow-up/future EMG's be at the same center with the same doctor/technician. EMG's/NCS vary widely between providers, so the only way to be more certain about changes is to see the same provider.

I am surprised they didn't mention BFS, also surprised they threw out "possible ALS." Sure, with unequal reflexes they may want to monitor you over time since you are young. But really, unless you start developing weakness then what's the point worrying you prematurely?

I've dealt with benign fasiculation for almost 5 years, and worried myself with the fear of ALS. I have brisk knee reflexes, but they are equal bilaterally. I have chronic denervation in my left foot, which may be related to some lumbar/sacral issues I have. My point, I guess, is I know how anxiety can get to you about this. I've struggled, and finally gotten (mostly!) to the place that I can't worry about something that hasn't shown up yet. ALS shows its face and progresses in a fairly predictable pattern, or so I'm told. Keep an eye on your symptoms, but it doesn't seem clear that it's what you have.
__________________
Idiopathic Sensorimotor Polyneuropathy
Atypical Migraine
Chiari 1 malformation 7 mm
PLIF L5-S1 Sept. 2013

Lumbar MRI March 2013: degenerative changes from L3 to S1. L3 and L4 have tiny annular tears with disc bulge. L5-S1 bilateral pars defects anterolisthesis (spondylosis/spondylithesis?) I have an annular tear here too, along with a conjoined left L5-S1 nerve root. Mild effacement of the thecal sac at the origins of the bilateral S1 nerve roots, left greater than right. Mild bilateral Neural foraminal stenosis.
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