43M, Family history, Cramp/Fasciculation/possible atrophy. Saw nuromuscular specialist. Looking for any advice or thoughts.

[guy123]

Hi everyone. Thanks for reading this. 43M, grandmother died of als (no others known). I've been twitching all over body for 3.5 months with cramps in hands and stiff/crampy left leg. First emg and neuro was clean after 3 weeks of symptoms. Symptoms inceased. Two weeks ago I was able to see a neuro specialist who noted: limb hyperflexia, possible atrophy in left tricep and slight fasciculations seen in left tricep and legs. All other tests seem to be normal. They want to continue monitoring me. Sent me for cervical spine mri and another emg. Now, every time I raise my arm I see fine fasciculations in my left tricep in addition to the full body random twitching. I am very worried. I asked for the emg asap and they obliged (early Nov).
Any thoughts?

 

[lgelb]

I'm very sorry about your grandmother.

Not quite understanding the sequence of events -- you've had 1 EMG or 2? Have you already had the MRI?

Full body twitching generally argues against ALS, and if there was no clinical weakness, that's good, too.

 

[guy123]

Thanks for the reply. I had one clean emg after 3 weeks (mild cts found). Waiting for the second emg. Had a brain MRI that was normal. Now waiting for the cervical spine MRI. No clinical or perceived weakness. I am worried about this new twitching which is not random like the others.

 

[lgelb]

Twitching often feeds on itself, especially when benign. There are also very real benign cramp/fasciculation sydromes.

I cannot remember a case of twitching with effort in itself (no functional impairment) as the first sign of ALS over the time period you have described. I would keep a log of the conditions under which you see it, for the neuro -- like if you make the same movement when you wake up, after you get ready, middle of the day, late at night, after exercise, eating, a shower, etc., are the twitches worse or better.

 

[guy123]

Thank you Igelb for your help. My second EMG is coming up. Unfortunately my left bicep has clear atrophy that suddenly appeared now. There is missing muscle in the area near the elbow. With the constant twitching there I really don't see any other options. I am really crushed.

 

[lgelb]

There are hundreds of other CNS and systemic conditions in between benign twitching and ALS. If you search these forums, you'll see a lot of people worried about "sudden dents" that do not have ALS.

To name some of the worst, there are adult-onset myopathies. But these, along with ALS, would entail observable loss of function.

ALS is about motor neurons dying in phases. If you have no impairment of function in three areas where you/the neuro perceive a loss of bulk and twitching, that is not what we expect to see in ALS, where loss of motor neurons impairs movement and causes atrophy, sometimes with twitching as the neurons die.

While you wait for the repeat EMG, I encourage you to live the life that others here cannot -- a zero-downside strategy.

 

[guy123]

My emg shows no indication of als. Just some chronic radiculopathy. I am trying to put this behind me. Thank you Igelb. You and the others on this forum answering posts are not only helping others but also inspiring others.