Living with Uncontrollable Twitches

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TwitchyMD

Well-known member
So just reaching 6,5 years. I stopped all medication and things are..well hard to say...some days are not that bad, are generally not nice. In the morning, I wake up and with the first movement my arms, shoulders and back start to twitch. The quads join often. During the day, these (shoulders, arms) are the most active, often accompanied with hands. No real cramps but cramps can be incuded easily.As I mentioned earlier, it has gotten worse. 30-50 twitches per hours in upper body mostly, strong ones. Sure, it is not constant, persistent but it does not really matter with this frequence. The arms and shoulders especially bother me..
 
Hey Doc, at Least your almost 7 years in now you know it's just benign twitching ... That's gotta help you !If its any help I can look at my calfs and watch them go per second or loads per minute, my tricep goes every second or so for the past few days and it stayed previously for 10 days every second !! I get all the random ones too and the persistent tongue tip twitch too !! Lip buzzing, toe tingling and all random stuff ... I seem to have a sciatic type pain from my butt and it kinda shoots to my foot sometimes but really sore in the butt !! I hope it's an unrelated issue that will pass soon! I also get weak feeling that come and go in my legs or arms but they do come and go, right now it's my right arm that's twitching has the weak feeling..All that said, normal clinical, EMG & NCS and my neuro said he is not worried at all about me so I would say your in the same boat !! This thing seems to come and go !Have you had a change in routine lately or anything dramatically new in your life ?
 
BFS Burger,Out of curiousity, where did you get the 4 year time frame? Is it from the Singh, et al. Journal of Neurology article about the four cases where patients were orginally diagnosed with benign cramps/fasciculations and then developed ALS, or another source?
 
Seepi, I can always count on you to be a vulgar, inappropriate slob.I intentionally wrote it in shorthand because I didn't intend to alarm anyone.But thanks to your insane, psychotic anger issues, you've drawn 10x more attention to it, and now we get to discuss it in the open. Congrats psycho.As you can see by the post immediately above, writing in code worked, as nobody other than Twitchy has a clue what im talking about. That was the goal. But now that you've had a temper tantrum....Paraneo was not a reference to ALS, Steph.Seepi is just having a sh*t fit because he's got a hard on for me. He is part of the way cool "BFS chat room" crew who has had a hard on for me, for months. They've discussed me ad nauseum, seething with rage at my desire to help people on this forum. F*cking weirdos. :rolleyes: I've proven my good intentions and careful wording to reduce people's anxiety here, in literally hundreds of posts. I don't have to prove myself anymore. My comments are called bullsh*t by the chat room studs whether they're helpful, informative, or reassuring. It doesn't matter. When typing the above post I did so carefully, and believe it or not - with the potential for your trolling, your psychotic rage in mind. You're entirely too predictable. I opted to write it anyways, somewhat "in code" because I wanted to reassure Twitchy. He and I have discussed the P topic at length, so my comment was an extension of those conversations I'd had with him. Put me on ignore Seepi. And please spare everyone the overreacting for theatrics sake. -BFSB-
 
Seepi, TwitchBFS did not anything wrong, he just mentioned a fact stated in a few medical studies, why do you react in such a rude, vulgar way? He is not making anything up and what this site is for if you cannot use real medical data? Steph: I'm sure TwitchBFS referenced the paper you mentioned or similar ones which described situations like this (two of which came out this year). Anyway it is "my" thread and I'm definitely fine with posting real medical data as TwitchBFS did.
 
grapepie: in most cases 6 months is really enough. Those who develop something sinister later (months, rarely years) are exceptions, not the rule.
 
This 4 yr thing.... I had a chin twitch 4 years ago that stayed for months then I wasn't bothered by twitches, just the odd random one but I never really took note.. So my question is does this mean I've been twitching for years ? This recent flare up has really been hard with the hotspots moving about and I'm worried about my lower back pain moving to the other side now in case it's related ! But people say pain is not related here ... :(
 
OptimisticGuy, I would take it as a good sign - your BFS most likely just progressed but it started years ago. I had something similar, I had twitch around my nose 3 years before my full blown BFS started. I think it is definitely related because for "normal" people fasciculation do not last longer than minutes or hours.
 
Really ? When the chin thing was going I had a fair amount of twitching all over but it all seemed to subside ... I have always had twitching though, say I had my arm sitting a certain way it might start going bonkers but if I moved it it would stop and I have always had feeling in my calves but not stopped to study them unlike now I look and can see loads of twitching in both calves and I get them all over now too... What do you make of this pain in the buttock that shoots to my foot ? It's really sore !! It only started about the same time as this recent flare up! I always had pain on the other side but never shot down to my foot !
 
Well so then it is quite obvious you have been twitching for 4 years at least. It does not matter it subsided - the same happened to me (subsided after a year and returned after 3, but never disappeared completely).The pain sounds like radiculopathy but I doubt it is related to your fasciculations as it would be only restricted to areas innervated by the nerves coming from the affected nerve roots.
 
Hello TwitchyMD,I just read your remark concerning Anxious Guy being into to twitching already for some years because he had a chin twitch some years before bfs showed up.I've been having an occasional eardrum/inner ear twitching for about two or three years now. I only realised that it is twitching, when all the other mess with the calves and arms started. I'm still hoping that they are related, because that would mean that I've been twitching for several years now as well and really wouldn't have to worry about *** any more (in addition somebody mentioned here on the forums, that eardrum twitching has never been seen in *** so far). What do you think?
 
This has caused anxiety in me, this 4 year comment. I didn't read this I code when I read BFS burgers comment, I knew exactly what he meant and lots of other people will get paranoid. I've been twitching for a year and had a hotspot in my thigh for 5 weeks. OptimisticGuy, your pain sounds like siatica?
 
i agree wolvesbite,ive been twitching 7 months+ but had an eye twitch early last year for 4 months...id never heard of the 4 year thing!anxious..your pain is definitely sciatia if the pain is going from back to your foot..
 
From what I have read it does sound like sciatica, its really bad when I stand after sitting then it kinda eases off but its always there to a certain degree... It started out like a tiny pain if I bent backwards and it got worse and now it shoots right to my foot :(Does anyone get hot spots that stick around for weeks then go for a couple of weeks then return? I was lifting some stuff and my right tricep twitch is back :-sI also don't think my calves ever stop.....even when I don't feel much activity I would look at them and they are twitching ... Anyone else in that boat ??
 
As you know anxious, my thigh had been twitching for 5 weeks, it's stopped for 2 days and just started again , just got a major panic attack, burning chest, as I thought it had stopped
 
I felt the need to point out a couple of things for the benefit of those in this community. 1) TwitchBFS is awesome. His advice and reassurance here is invaluable, and I know he has helped many, myself included. 2)However, this: "you're even *well* past the paraneo time limit for it showing up, which is 4 years" needs clarification. I thought this, and Im sure many readers and lurkers did, even before Seepi27 pointed it out in a WTF kind of way. 3) I was a lurker here for many years (I've been on the twitching train since 2009 folks) and I like to think that we OWE it not just to the registered members, but to everyone who comes across these pages, to be factual and not sugarcoat anything. The great news is that, factually speaking, the chances you (after clean exams, twitching for months, no weakness) have als is so slim its nearly impossible. What I could find, is that paraneoplastic syndrome (is paraneo short for it? clarify please) is a disease or symptom that is the consequence of the presence of cancer in the body, but is not due to the local presence of cancer cells (via wiki). So when he said it had nothing to do with ALS, he maybe meant that it had to do with perhaps twitching heralding cancer. Or ALS heralding cancer. However, 10000000000 other things can mean cancer, such as pain, itching all over, weight loss, rashes, vision loss, etc etc etc etc etc etc etc. So lets not start worrying about getting *beep* cancer on top of getting als please. It must be Monday.
 
Also, there's a BFS chat room "crew"? DId not know. I feel so out of the loop and uncool now :( like its middle school all over again, lol! Its amazing to me that there is drama everywhere, like even places you wouldn't think.
 
I agree, BFS Burger has been a great help to me and others that I see coming along.Thanks for clarifying that other point Emmie !I know I have said this before but my calves never seem to stop twitching... even when I think they are calm I roll up my trouser and they are twitching away ... :-s Anyone else with this ?Oh and where is the chat room ?? I didn't know there was a chatroom !
 

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