ALS: Seeing Changes Over Time

[Garetteimi]

Hi, You asked if you had been twitching since March if you would be showing some weakness. Although I am not a doctor I would have to say YES! I have a client that has ALS. I see him every four weeks or so. In fact I saw him today. Everytime I see him you can see a huge difference in his condition!! Even in people whos disease progresses more slowly, the changes are apparent!!! Six neuros would not have missed it if you had it! When my friends husband was diagnosed, (this is not my client but another man with ALS) even though the doctors could not say for sure that he had ALS until they did a lot of tests, they ALWAYS suspected ALS and told him so. I think that one of the reasons we all worry so much is that it seems like it takes a long time for doctors to diagnose this horrible disease, so we think that it is something elusive that the doctor has missed but the truth is they usually know but have to make sure and rule everything else out before they say definatively that you have it. Can you imagine how horrible it would be if doctors ran around telling people they had horrible diseases when they didn't? Having said that please dont think that your doctor knows something that he/she is not telling you!! If they were worried about it they would not tell you that they could find nothing wrong so go home and live life. They would not want to give you false hope any more than they would want to freak you out with a wrong diagnosis! I hope that nothing I have said here scares anybody. I am always afraid that what I write will be misunderstood and cause people anxiety so I hope that everyone who reads this post will understand that both of the men I know with ALS were diagnosed fairly quickly after they had symptoms and the most apparent presenting symptom was weakness and muscle wasting. Not twitching! Now go and make your children pancakes and do what my client with ALS is doing.....living the life he has and enjoying all of his blessings! -Stacy

 

[ytewestGo99]

In ALS twitching is the result of the disease, not the cause of it. Problems with the EMG can show up weeks to months before the twitches even start if a person were to have ALS. So, if you have a clean EMG and visited 6 neuro's, you are in GREAT shape. My neoro told me "Look, 3 neurologists can;t be wrong". (Because I visited 3 and had 3 EMG's done). And he was right. And so are your neuros. I agree, don't Google ANY more symptoms. I did that and drove myself mad for no reason at all. We are NOT qualified neurologists. Take your doctor's word and believe it ... ALL 6 OF THEM ... sorry, had to put that in all CAPS

You are just fine.

here are some quotes from top Neuros at the Cleveland Clinic:

“Sorry to hear about your fasciculations. Good news is that since you have no real muscle weakness and your EMG is normal, the most likely etiology of your fasciculations, cramping, and anxiety is a condition called benign fasciculations."


"Unless there is EMG evidence, fasciculations are not diagnostic for any disease that we know the etiology of. Benign fasciculations occur without EMG changes or muscle weakness. They go away on their own (most of the time) and do not increase your chances of coming down with ALS."


There would have to be ongoing disease of some time (5-10 months) before one sees obvious fascicualtions and therefore by now, you would have epxressed the neurological exam findings of profound muscle weakness. So, again, I do not think you have ALS, nor have we seen anyone with fasciculations and a normal EMG needle exam develop ALS.


Research is showing that there are very subtle changes on the EMG weeks to months before the typical symptoms of twitching (called fasciculations) occurs.


“By all the exclusions, it sounds that you have what are called benign fasciculations. These events are noted by fasciculations that come and go or can often be continuous. The fasciculations are usually made worse by fatigue, lack of sleep, and anxiety. They are not harbingers of ALS or other muscle disease. However, they are really psychologically draining. Watching your muscles twitch (fasciculate) is really bothersome. We have patients that have had these for years and some only a few days. It is very individual dependent. Some patients respond to low dose benzodiazepines, but many do not.”


WHEW ... that ought to clear it up

 

[LegitTriz]

I really understand your alarm. I had a really bad twitch flare up a couple of weeks ago. The twitching was so strong and persisitent (more so than ever before) that I really started to wonder if there was something seriously wrong. Up until this point I thought I was home and dry and would never worry about this stuff again. Then just like you I was driving myself crazy wondering what on earth could have triggered the twitches to suddenly go ballistic.

Now my twitches have died down again - it's so frustrating to not know what causes these flare- ups.

Anyway what I'm trying to say is 1) I really understand what you're going through and 2) It took about 2 weeks for mine to die down to a more gentle level - and I hope it won't be long before yours settle down again too.