Constant Twitching: My Reality?

[ySplendidCrafts9]

My feet just wont stop twitching and now my calves are pretty constant! I just try to ignore it and tell myself it is nothing, just BFS, then I read the post by Bart saying the Dr thinks he has a MND now after 2 yrs, like WTF?? All day I have been kinda of freaking out. My left foot has way more twitching it than ever it moves my big toe when I am relaxed... I freak b/c it is 24/7 and has not stopped for a second since the onset! I get them more regularly in hands, elbows, and shoulders now too. Now I am confused a bit, should i feel better that more places are twitching b/c that is less likely to be that dreadful disease or more fearful b/c I have had this now for 9 months and it is getting worse and more widespread???

 

[Krackersones]

ySplendidCrafts9,I relate to all your feelings. I have pretty constant twitching or some kind of nerve activity going on all day, everywhere. Sometimes they get strong enough to grab my attention but most of the time it is an annoying background sensation (probably with the help of Klonopin). I have read so much and talked to so many neuros and still do not get the idea that there is a clear answer to what type of twitching is more concerning. The only type that would be less concerning for sure is the type that is so local it can be traced to a specific pinched nerve or trauma. The bilateral or systemic type is a different ball of wax. I know Bart's post worries a lot of us including me. I sent a message to him offering any support he needs including helping him see my neuro and staying with me if he needs to for a second opinion in the U.S. My neuro sees patients from around the world so his practice is set up for that. I have no idea how complex Bart's situation is or how comfortable he is with the expertise available in his country or his resources but I want to do whatever I can to help. I do believe there are rare things out there that require someone who is used to dealing with rare things and can distinguish them from the ordinary bad things or at least be willing to try something novel if the situation warrants it.For me, the things that reassure me most are the fact that my twitching was widespread suddenly. It did not slowly evolve over a long period or at least something turned it on high and it escalated very quickly. This type of onset is not consistent with ALS according to my doctor. Nothing about this stuff is an exact science. Let's hope Bart sees a neuro soon and gets some good news or at least some news that gives him hope even if it comes with a bit of uncertainty.By the way, I get twitches in all areas of my arms, legs, and torso everyday. I wonder how many people on this board really have it this widespread and daily. I also have lots of tingling, so sensory nerves are impacted too.Krackersones

 

[austignite2020]

I'm with you guys... Total widespread twitching, many times every minute -- all over the place, everywhere... My thoughts are with Bart as well.

 

[BarbiePetals]

I also have widespread twitching everyday all over my body. I just started taking Lyrica and it seems to help cut down on the twitching. Chez, I am with you... I'm so sick of all this already. The only thing that helps me get through this is all the normal tests I have had and the fact that everyone on this board experiences the same thing. As for Bart... I don't know what is going on with him. The one thing that confuses me is that he said he saw a neuro 3 weeks eariler before his back twitches started. He said he passed the clinical. I don't understand how then suddenly he has weakness. I really don't know his situation but his post scared me. I'm actually going to take a break from this board cause sometimes the posts can really scare you. I wish this board was more about BFS than ALS.~Leslie

 

[austignite2020]

I am glad Bart feels comfortable sharing everything with us. Although I agree that BFS is the point of the board, the fear for ALS is part of the condition for many of us... and if any of us, pray that we don't, for whatever reason, go on to develop any other condition, doesn't have to be the scary one, it's nice we can post it here and have each other for support.