Welcoming 2021 - Help Requested

Hello to all of my fellow BFS'ers ... Firstly I would like to wish you all a Happy and very healthy New Year ... after health we dont need anything else right? Apologies to burden you all with another question, but this one kind of got me scared a little and I am not too sure what to make of it ... Any kind of input or similar experiences would be appreciated and would allow me to rest better at night. For the past week or so I have been having some light pain in my left thigh - feels as if the muscle was pulled or something ... kind of hard to describe the pain ... but then last night I was lying down on my sofa just watching some TV and then BOUM!!! These brand new kind of fasiculations ... they were on my inner left thigh muscle right next to the knee ... its not the location that got me freaked out but more the way that these twitches take place ... here is a description of it (its easier when you see them ... hope some of you can vizualise and relate to this) ... the muscle would be sucked in and who be held down for about 5-7 seconds and then it would release ... really weird ... kind of like if you have air in a plastic bag then you suck the air out of the bag and in 5-7 seconds you blow the air back in ... the feeling is very very strange and I have been having this on and off since last night ... Last night it lasted for a few hours and was still there this morning then it stopped for a few hours and came back ... now its gone again ... The weird thing is that the are where these twitches took place feels very, very weird ... its tingles a lot ... I feel lots of movement in that area (under my skin) and I have some pain as well ... especially when I get up and walk around ...I dont think its related but wole up this morning with massive pain in my left hand (wrist area) as well ... just mentionning it in case it might be useful.Thanks in advance for your input/stories/reassurance and please all take care of yourselves. Will

I had twitches in the same exact spot yesterday. Mine weren't like as you describe but the same spot. Unfortunately, for me, this is the same spot where I swear I have muscle atrophy (non-dominant leg so pretty sure its all in my head--at least that is my hope). This muscle twitches on me occasionally but not steadily. I have had soreness in this same spot as you describe. Mine can be related to exercise as I have been pushing my legs a little more in the last few weeks--to remind myself that my muscles still work. Looks like you have been having BFS issues for while---if it was the big nasty I'm sure you would know by now. Relax and enjoy the muscle show. Pretty sure the twitch will come back in a few weeks.

Thanks for the response UTtwitch - I have had twitches in that exact spot many, many times and have had hot spots there for many, many consecutive days but its the first time that I have had these types of twitches (the deep, holding it down and then release twitches) ... very weird sensation I must admit ... It will soon be 2 years that I have been twitching ... but I have seen somewhat of a change over the time and recently I read an article about foods with Aspartame ... and I am a big fan of popsicles (Mr.Freeze mostly) ... I would be able to eat 3-4 jumbo ones every night before bed ... and since I read this article I have stopped completly ... I think that this has helped as well ... anyways its only water and sugar so it cant really hurt to stop ... I am also still being followed by my neuro ... she used to see me every 3 months but now its every 6 months as she said that things seemed to stay quite the same ... guess its a good thing

was hoping to get more responses ... the whole left thigh feels quite weird I must say ... feels lke something is cooking under my skin intensively even though twitches seem to have calmed down I still feel something weird under my skin ...

Will97, I had the same kind of prolonged twitch near my left knee for a few days, then it passed. Exactly how you described it. Weird. But I'm sure it's nothing to be worried about.

That's exactly how my twitching started except it was in my lower eyelid. The muscle would contract and hold for a couple of seconds and then release. Thought I was having a stroke due to the location.

I have them on the same exact spot of both thighs. If I understand you correctly. you are talking about the muscle on the side just above the knee. I know exactly what you are describing my twitches felt weird as well. it would pull down and hold for 3 seconds and you could feel it then release . I know that feeling. but I don't have it now however the feeling something under my skin in both thighs is still there. small pulse kind of twitch all over that area

I appreciate so much your comments guys and girls ... Unfortunately I still have that twitch in my thigh ... the exact same spot and this almost a week later now ... My anxiety is starting to get back to me and I really dont want that. I just feel scared because it feels really weird and not many people seem to have had this ... on top of it I have started simultaniously twitching in the exact same muscle but in the right thigh ... I also know that in 2 months it will be 2 years that I have been twitching and feering the dreadful beast ... I dont fear it as much usually and have managed to get most of my life back and control my emotions betetr but that doesnt mean that I dont still fear that dreadful disease and that even though I've been twitching for 2 years now ... I've read that people had been twitching for many years and that after 3-4-5 years they would get the harsh diagnosis ... so this is why I cant really clear my head completly that its still possible that I could have that disease ... Sorry for being a rain cloud but I really am not feeling super well lately and especially today ... I am trying to stay strong and not rellapse to that dark side again ... Thanks all for taking teh time to read me and give me your input.Will

In addition to having this thigh twitch for the past week I also still have that massive left hand wrist pain as well. My left legs calf muscles have been in massive pain for the same period of time … seems just really weird and doesn’t seem to get anything better ... I would have hoped that after a week I would notice a difference but it has not improved at all

I would really appreciate if anyone has anything to say as I am really starting to get more and more afraid ... I still have hese twitches in the exactbsame spot ... its been well over a week now and no improvement ... i know its not going to stop my twitches but i would appreciate your input or similar experiencesthankwill

I have had them for one year and still do. Don't worry they are annoying but with no meaning. Once you stop thinking about them they will fade away slowly. Do squat the will go away

I feel like its getting worse eac day ... I have some really bad ''thumpers'' and entire thigh twitches in my left thigh ... they actually physically hurt as hell ... instead of getting better by the day its getting worse by the day ..­. I just dont know what to do right now ... maybe I should call my neurologist and tell her whats going on with me and ask if I can have another EMG done to see if anything has changed since last time? ***I need some relief and help ***

Will -- I've had all the stuff you're describing and more. My arm has been twitching pretty much nonstop in the same place since August. When I went back to the neuro because my left bicep was shaking from all the twitching, he really could have cared less -- all he cared about was whether or not I had any weakness in that arm (I didn't). It's finally feeling better now. I also have had the thigh twitch you're describing. Try not to worry about symptoms that seem to get worse. As long as you have no weakness (and it doesn't sound like you do), I'm sure you're fine.

I dont think that I have any weakness but then again I could be wrong ... I am sorry that you have this twitch in your arm for so long ... it sucks!!! I am worried because that stupid deep twitch in my left thigh muscle wont go away and its been 10+ days and in addition my right thigh has started twitching in almost the exact same place so now both my thighs are twitcghing which is why I am more worried now taht I even was before ... I honnestly thought that I was doing better just to realize that I think that I am not doing that well ... I wont say that I am at my worst point ever but I am going down that dark path slowly ... I can feel it and I am really trying not too ... this is why I need any kinfd of help I can get ...

trust me my thighs have been twitching since this bfs started. I just ignore them. Don't worry they are nothing to worry about. my neuro told me if you can do 10 squats free weight only your body then you are fine. exercise do help. I have the twitches front side back of my thigh you name it on both side. I had an emg needle on that specific spot but nothing showed up .

Have the sucking in thing on my left hand right now. Top of the hand twitches ( sucks in ) and middle finger moved right then goes back...sucks for sure

I guess that its everything put together that is getting to me ... the deep twitches, the tremors, the pain it causes, the burning sensation ... etc... its as I could feel my muscles are really under pressure or feels as if they were getting weaker ... I really hope that it will pass soon ... cant bear this crap much longer

HiI have had these "suck in and hold" twitches you are talking about in my left calf and to a lesser extent in my right thigh. They are absolutley horrible and you cant miss them or ignore them. I am quite skinny and once I had on tight black trousers sitting crossed legged in hairdressers. " Your leg is moving on its own she told me, how do you do that ?"...(no *beep* shut up and do my hair). Oh there it goes again, are you kind of sucking it in and holding it in that position, are you controlling that then, thats so good, ( yes I just love it, sorry I cant do it in time to music for you, now do my hair and let me escape ) " ! Back in March 2012 I went to my consultant neurologist and showed him it actually happening. Right in front of him my calf sucked in and held itself there in suspended animation before releasing out slowly. He laughed and told me that large muscles can have large dramatic twitches. He also said these type tend to be more associated with cramping. He said that substained contraction was nothing to worry about, then shocked me by saying watch this I will make it do it again for you. He then touched it a bit and off it went again. He had a lot of clinical experience with ALS/MND and was not in the least concerned. He said he always suspects ALS by the clinical exam alone, if that is clean he would never order an EMG. Told me to go away and learn to accept these fasciculations as part of who I am. I hadn't had an EMG at this point. ( Of course I didn't listen to him and went on to have 3 EMGs in the next year and a half, all showed fasciculations but nothing else)I had these type of fasciculations for about 6 months in my calf, and seemed to be present with the internal vibrations lots of people get. Eventually it slowed down, they began to fade away . I am going through the phase of lots of smaller twitches at present in various everchanging locations and internal vibrations constant ( 7 seconds on and 3 seconds off constant 24/7). (The cyclic rhythm of the vibrations puzzle me, i.e. I though fasciculations were randome not regular and cyclic....but no matter. I will always remember the " suck in ones you describe though" I was sure something so dramatic could not be benign. My leg was acting like it was possessed, like I have an alien breathing in there.Keep strongHelen xxx

ps ....... maybe I do have an alien in my leg...better than " that other thing " we all talk about. Up here in Scotland we have 2 major football teams that get huge press coverage. One of the ex dutch players who is 38 has been diagnosed with ALS, he was talking fine 4 months ago and now the interviews are done with subtitles. Makes me ashamed of myself that I have to leave the room when he is on the TV. This fear thing is not good for us, it changes us. My neurologist says not all ALS patients die only able to move a cheek muscle for communication. Many find a peace and can communicate needs even at end stages. The disease is huge for people with health anxiety because it signifies a total loss of control, which is most anxious peoples biggest fear.... but I over simplify.Keep strong. I am still going 2 years and 4 months into this, big suck in fasciculations in all.Helen xxx

Hi Helen, thanks for the message. I appreciate that you took the time to share your story ... I could imagine the hair dresser bit as something similar also happeend to me. I sent you a PM, did you receive it? Thanks to everyone for sharing your thoughts, stories and for the encouragements. Will