Prayer for Mark to Hear

[ristinaL91]

I'll say a prayer to that one Mark !

ristinaL91

 

[ydav3yat3s]

I agree (as if my opinion mattered, compared to a neuro's) that widespread twitching is not suggestive of ALS, and pretty much everything else that's been written since my last post. But I think the truth probably is that on rare occasions it can happen. However, rare to the point that many neuros don't feel a need to do an EMG without other signs. So I think that makes it pretty unusual, but within the realm of possibility. As my neuro said, "nothing in neurology is ever 100%."

I mentioned that Braintalk case--I felt compelled to post because of having assured that person when he first came to the board that he didn't have ALS, when he in fact he did. It wasn't a good thing to have done.

 

[SwiftTaySwift20]

I think the main thing with this condition is time. Clean emg, clean neuro exam over time. It's gut wrenching day after day. I can't really say how long is enough time but I have to say it is at least one year. At my 6 month mark the neuromuscular specialist that I saw wanted to do another emg. He said he wanted me to make an appointment at the one year mark when I left. I aksed him if I would need another emg at 1 year and he said "no....but I want to check your strength and reflexes again and that will probably be it." That's what I base the 1 year mark on. Of course that was before my VGKC level came back somewhat high so I will probably end up seeing him longer should everything else turn out ok. I am not totally convinced he will not want a third emg at my one year mark so I will have to wait and see.

Swift_TaySwift20

 

[ydav3yat3s]

Well, if you want to be really really really confident, then yeah you can let a year pass. There's nothing wrong with a cautious neuro. However, the Mayo study says you can be "strongly reassured" that is is benign after clean EMG and clean clinical exam at no matter what stage of twitching. That is a powerful statement from one of the best clinics. If not the best.

There are some divergent opinions, but the way I try to look at it (and often fail) is, the difference in terms of percentage odds of having something nasty--whether you've had a BFS dx right after twitching started, or a year later--are so close as to be more or less inconsequential.

 

[BandersnatchF]

zEarthyRanger hit it on the head. Twitching is a sign of trouble in the lower motor neurons (those in the spinal cord). Weakness can be a sign of trouble in either upper (brain stem) or lower (spinal) motor neurons. Both upper and lower motor neurons are affected (eventually) in A/L/S. Someone with weakness along with other signs such as hyperreflexia and spasticity might have upper motor neurons affected, but it wouldn't show up (much) on an EMG until the lower motor neurons were affected.

The reason that EMGs are so good at picking up trouble in patients that are already twitching is that lower motor neuron disease (which could cause twitching) will show up on an EMG. If electrical signs of MND don't show up, the twitching is almost certainly (nothing in medicine is ever 100%) caused by something else, such as or just anxiety.

 

[ydav3yat3s]

I presume that also goes a long way to explain why the EMG can easily miss ALS signs in some cases when there is clinical weakness (in cases where no twitching is involved).

That clears up a lot of confusion for me.

 

[BandersnatchF]

Absolutely. If only upper motor neurons are involved, an EMG will show minimal, if any, change. MS, which is a disease primarily of the upper motor neurons, often involves weakness (it did in my brothers), but results in minimal EMG changes. On the other hand, the UMN changes are often visible in an MRI. This is why quite a few of us (including me) have had MRIs—they're good at picking up UMN damage which could also cause weakness. In my case, the family history of MS was sufficient for my GP to ask for an MRI right off the bat. My MRI came back clean, strongly suggesting that I don't have MS (the MRI can miss it in about 5% of MS cases).

For those who are worried about MS, don't be. It can be managed, particularly for mild cases, which is what anyone here would possibly have (serious cases would have more solid symptoms). Also, lifespan is normal or close to it. While it's no picnic (according to my brothers), it's not the serious diagnosis it once was.