4 Years of Twitching: Reflection

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TwitchyMD

Well-known member
Well 4 yearso ago (+- 2 weeks) this all started for me.FIrst half year was terribleSecond and third year were quite good and I think I did not twitch muchThis fourth year was probably as bad as the first one, as my tongue started which brought me to super anxiety state.Last weeks I feel the twitching is more frequent, usually every 30 seconds and spread around the body. Very often it starts after movement which I worry about. My morning - I wake up, turn head - neck twitches. Change the position, both calves will twitch quit strongly for a few seconds. Roll to other side - abdomen twitching, back twitching...move my legs, knee will twitch along with thigh.I can say for sure, it is the worst this last weeks, worse than whole 4 years before.I know it can be BFS but as I am forced (due to profession) to read all research, I am scared whether this increasing hyperexcitability does not precede something else. I am in great anxiety and I believe it does worsen the symptoms, but how can I prove it? Even the benzo does not work for the twitches anymore! I took 1,5 mg and the effect was zero.I have changed my diet - no coke or coffee (zero caffein intake), lot of antioxidants, daily 1000 mg of magnesium for months..and there is no change except for maybe increased twitching.I am sorry, I just needed vent as I feel so bad...But to do not end with negatives, after these 4 years I do not have weakness I know about..EDIT: Also on this site it seems to be only few people...where is the rest? Many, many disappeared..hopefully they moved on but now it looks like there is 20, 30 of us? That is not much.
 
i think u r in relapse phase of pnh/bfs right now.TwitchyMD,i too being a doctor,can very well understand ur problem.I too have remissions n relapses,20 to 50 tongue twitches/day,random finger jerks,pain in shoulder,arm,hand while using it.These 3 things just kill me all d time.I mean to tell u that u r not alone ,lot many r there.They may not b posting but must b reading d forum at least a day.NOW a days ,i personally post rarely but peeps d board at least twice a day.My advice to u is to take a deep breath & relax,u dont have weakness n wasting so no ***.For d peace of mind,consult a neuro n get fresh emg.Go to some picnic spot n enjoy with family,do yoga n meditation,take anti deps like venlafaxine(i am on it with clonazp).Take care.....baily.
 
I am sorry twitchydoc. I wish I could be of some more help to you, but I am a newbie, just 11 months into this. However, you posted something before about being able to elicit a twitch with movement, and a lot of people said this is the case with them. Even me. From the beginning I could elicit a twitch with movement, exactly like you are describing in this post. It's still like that with me too. It's like this has a mind of it's own because it seems like half the time I move and something twitches, but then later on I can make the same movement and it doesn't twitch. Anyway, let's hear it from some more people...anyone else out there get this? ITanya
 
I know you aren't trying to worry anyone else, but the fact that you are worried about movement causing twitching is starting to worry me now because I get this too most of the time.... I would really like to hear it from everyone else who has this as well.... :)
 
Twitchydoc -After 4 years of this stuff, you should be way past this phase. BFS is different for everyone and everything about the twitching and other symptoms can change in frequency, severity, location, etc. at any time. Twitching is more frequent of late and starts after movement? *yawn* This forum is full of posts from people who can induce twitching by a variety of ways. And as frequent as your twitches seem, there are people here who twitch more than you probably by a factor of 10 (or more). No big deal. Also, changing diet, taking supplements and benzos doesn't necessarily help. I've tried all of that, and could not tell one bit of difference. I've just given up trying to figure it out and accepted that I twitch. SOmetimes more, sometimes less. Maybe more because my anxiety, the weather, sickness, full moon....there isn't always a rhyme or reason. Trying to figure it out just drove me mad. As to your last question...at any given time this site seems like there are only a few people. Everyone eventually leaves due to a variety of reasons, but there's really no point to hanging around once you've moved on with your life. People come here for support and to learn, but once they truly accept their condition there's not really a point to hang around. Yeah, its great to help others but eventually it gets repetitive and life happens. They pop in now and again but posting often enough to be noticed takes a lot of time and commitment.
 
What you describe is exactly what I go through everyday. When I wake up and move I get twitches going off everywhere. So many of us experience this. It does not even worry me anymore (until I read some stuff on here which is why I think some people leave). Sneezing, Coughing, blinking.. also set off twitches.
 
So sorry to hear my friend. The twitches will bring anxiety so don't let them. I'd definately lay off the medical literature (neuro MND stuff), as no one out there knows much, and the more that is discovered only seems to show just how much is unknown about MND pathology. Please stay strong physically and mentally.
 
Old timers don't disappear. We just get bored with BFS because all the discussions are so repetitive. Once you get bored with BFS you will find something else to do too. :D)
 
Thank you all.43RichyThe43rd, thanks for your thoughts and appreciating my help, I am really glad if I can be helpful.Today its not so bad actually, its pretty unpreditactable.
 
Hey Doc,A lot of us I assume have simply moved on, or, like myself, check the board every so often and are silent since they would rather not be dragged into the anxiety mode (or perhaps too lazy to reply?). Could also be what Mario said - that they are simply too bored. Whatever the reason, I can assure you that we are all well health wise.In any case, I've been twitching for 3 1/2 years (more or less... I stooped counting). I think I even twitched before, but it was the tongue twitching that had me seek out a neurologist. I have twitched everywhere and in some cases I could induce the twitching. I had 4 EMG's and several neuro's who checked me (all neuromuscular specialist or movement disorder neurologists). All tests came back clean. My last follow up was a few months ago - this was done only because I have had severe jaw stiffness and wanted to get anti-spastic medication to help me with my TMJ. I also have swallowing issues, but these are due to extremely severe acid reflux which doesn't react to medication at all (I have constant sour taste in my mouth after eating almost anything...). In case you wonder, yes I still twitch, though not as much.As you can read It's not that I don't have health issues, but they are not ALS related. 4 years ago I would have thought that twitching+my swallowing isseues+jaw stiffness would definitely mean ALS, but in reality: jaw stiffness=TMJ (poor dental fittings+stress/bruxism), swallowing issues=Acid Reflux, twitching=BFS. In addition, I started exercising on a regular basis a few months ago. I am stronger today than ever, seriously - those new muscles are going to fit beautifully into that new Bikini I just purchased :) .So there you have it, an update from an old timer - such as yourself.As for research that points out slow progression - I have read a few myself. Those cases are so rare that as a scientist, you cannot conclude anything form those! It's been said so many times on this wonderful board, but I'll say it again: Anxiety is your worst enemy here and wasting your life over such a common condition would be a real shame.CheersMay
 
Thanks May, I appreciate your answer especially as you are tongue twitcher.My point is that old timers really should visit the board now and then and just say "I am OK". It is fair and incredibly reassuring for newcomers or others who are here more often. I agree it can be boring or you can be lazy to reply, but remember how you felt at that dark times of your anxiety - we were helped so we should help. Seeing posts from old timers is the best reassurance this board can give (IMHO).Thanks again :)
 
The problem with your logic ("oldtimers should check in more, it helps) is that you are automatically assuming the worst case scenario. You are taking "old timers aren't checking in" and you are immediately making the leap to "old timers must be dead or disabled!!!" Rather than make that leap in logic, why don't you go the other way instead, and leap to "Maybe old timers don't check in because they are embarrassed they used to be wrapped up in this stuff?"It is that broken leap in logic (going from an unknown immediately to worst case scenario) that is the root of all health anxiety cases, and is precisely what you should be working on. Forget the BFS symptoms, forget the twitching, forget the uncertainty. Work on going from "who knows?" to "OMG worst case!!!!" and it will help you immensely. Trust me, this is a lesson I had to work on once too. As for not offering reassurance to people because old timers are "lazy", I challenge that accusation as well. It is my own personal experience that reassurance is the absolute -worst- thing most BFS people can get, especially once they get past the early panic stages. After all, what more is reassurance than somebody else stepping in to solve your problems? "Oh my god, I'm scared, somebody fix it!" is an awfully weak way to approach tackling BFS anxiety. Instead of wanting someone to come in and reassure you, how about you go out and reassure yourself? If you constantly expect somebody else to come in and always fix your problem, you are never going to get very far with BFS recovery. What is going to happen in that case is you will become addicted to this board like so many others have done before, and you will be permanently stuck here. And then how far are you going to get with all this?It is for reasons like this that I always say that "reassurance" should be a four letter word. I don't think it should -ever- be used when it comes to dealing with BFS anxiety. Because reassurance isn't what recovering people need. Reassurance should be a last ditch crutch for panicked newbies only. Besides, anything you need to read to reassure you has already been written and posted hundreds of times before. This site has an awesome archive feature. It also has about ten years of solid history. What is the point of new people coming back to just repeat and spew back the exact same stuff?In short, hi. I'm Mario. I'm an old timer who doesn't post here anymore because I don't think it would actually help anybody. I am fine. You are going to be fine. We are all going to be fine. Sooner or later every single person here will come to the same conclusion, and then we can move on and move on with our lives as we make way for the newbies.P.S. I hope somebody reads this post in the archives in the year 2018. Yes, hi, you are going to be fine too!
 
You know Mario I used to get kinda aggrovated when I would see your post's like this one, but now I am starting to see the light. I keep going to people and asking for help and trying to get reasurance myself and I am getting nowhere but where I started, because you guys and gals have been over all this time and time again. I just need to listen to my neauro and what all of you have preached and move on myself. After 9 months I'm still twitching, having sensory issues,Tremors, and vision problems. But I am still walking, talking, holding things, and typing with my hands and not having to use my nose or my feet like some people with more problems than we have. For the last two weeks I have been obcessing about a dent that I found on top of my hand, I even sent a pic in a pm to one of the veterns on here to look at it. He said I'm fine and it's my ocd and I know he is right. Well I should have been able to see that for myself and not even bothered him with it.I know you could probably care less what I think Mario but I just wanted to say it anyhow.To the op, listen to these people and try to move on. Maybe you should be one of the so called lazy people and leave for a while yourself. I stopped checking in everyday myself and if I get real anxious I will try out anxiety sites. Funny how many people on there twitch and have never heard of BFS. I have only drank bottled water for the last year and I still twitch like crazy. Don't think it could get much worse with caffine for me.
 
I see both points here. There are times I stay away from here and forgot the twitching as best as I can. Then I stop by trying to help others and I read some crazy post on an article about ALS and it sends my own anxiety back up and I start doubting myself. So, I take a leave again. I don't want to completely leave because I love helping new people cause I remember what it was like in the beginning.
 
Mario, I think you are being a bit selfish now. I agree that asking for reassurance over and over can cause more damage than bfs itself...BUT if newbie comes (imagine it was you), the best help is the reply from an oldtimer.This site is for support and thus we should be providing it - I have been helped many times and I hope I provide enough help in return. If someone is scared and asking something that was asnwered year ago, I will reply either way as I know pretty well what anxiety feels like. And I do not want anyone to suffer from that terrible high anxiety if I can help so I hope the rest of us feel it the same way.PS: I am not assumming that people who "disappear" got MND (worst case), but I get many PMs from newbies who think so. Question like "his last post was 3 years ago, what happened?" only fuel the anxiety.I have already once suggested that kind of "good bye" post would be really benefical. If we decide to move on, we should simply post "I am OK and moving on" so everyone later on will be able to see that after all strange symptoms,scary moments etc..we are fine.I am only trying to be benefical for future sufferers.
 

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