Twitch question

[guitarguy11]

So I have been both randomly twitching and have had a few hot spots over the last year. After 3 months of almost constant twitching, my left elbow finally has almost entirely stopped. That hotspot finally got my anxiety back up and I made the mistake of going to an ALS forum yesterday. I know better. One of the posts in that forum stated that random one-time twitches that roam the body and are not hotpots are more suspicious of ALS than hotspots and having hotspots tends to be more BFS. Apparently, whoever wrote that heard, or thought they heard, that from 2 different neuros. Most of my twitches happen 20 to 30 times per day and are one-time pops. They occur in my arms, legs, back, abdomen and around my lips. I also have hotspots around my lips and ears. So, are one-time random pop like twitches that roam around more ominous? Thanks!

[Yuliasir]

nope they are not. I have that type of twitching (here there everywhere) for almost 4 years already, still no losses, not saying about MND.

[guitarguy11]

Thanks. What about twitches when the muscle is in use versus when it is relaxed? About half of mine happen when the muscle is contracted and the other half when the muscle is relaxed.

[Yuliasir]

Well I do not know whether it is meaningful difference ir not. Most of us twitch in relaxed status, but some of fellows who still do not end up with ALS diagnosis also reported twithes in the contracted muscles too. I had often seen such complain here and it all ended up with nothing bad.

[guitarguy11]

I have been twitching for a bit over a year, although in the last 2 weeks it has gotten worse again - last night I had a spot on my right forearm that was going so hard it was pulling my third finger forward. Scared me. It has done it a few more times this morning. Wouldn't I normally be showing weakness or dropping things by now if this was something bad?

[Yuliasir]

According to the exeprience of 3 ALS victims occured on this site, in a year would be highly probably DIAGNOSED if something really bad would happen.

No one of three fellows who left the site with proven ALS diagnosis did not dropped things or even felt any weakness before they were diagnosed. But they had enough of minor problems to attract attention of their doctors even in the period of very fine and minor losses, often still not evident to the patients themselves.

[HonkeyKong]

Guitarguy,

I feel as though im in the same boat as you.... 4 clean emgs (last one in April), but my hand twitches started back again last friday both on the thenar and the muscle under the pinky. I also had my 1 year anniversary yesterday and had a 4+ month hot spot on the muscle above my elbow and below my tricep. It seems as though you're on the same rollercoaster as well... I wish i had some great wisdom to pass on to you, but alas I'm in the same dark place. Just know that you're not alone.... I've been cleared by Penn State Neuro specialists after all 4 emgs and that's still not enough to reduce the panic when a new twitch arrives. If you ever need to vent or discuss any of your new symptoms feel free to PM me. I've read your past posts before and your symptoms seem very close to mine.

Best wishes brother

[guitarguy11]

Thanks to you both for responding. I called my neuro this morning and he can see me October 19. I also asked to be put on the list if anyone cancels. I haven't seen him since last March, and at that time, I wasn't having many problems - they had subsided. I only had one EMG (it was clean) - done very early into symptoms - I think 6 or 7 weeks in. So, I guess I will have to wait and see. Controlling the anxiety is the hard part. I did very well controlling it for awhile, but the last few weeks have been hard and of course the twitches have worsened. Thanks for the support.