Unwelcome Twitches Everywhere: Not ALS

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J

journeyer80

Well-known member
I was doing really good the last few months now these little twitches are everywhere like they were in the begining little tickles or pops and thumps everywhere face hands legs chest butt everywhere ughhhhhhhh man lol this is unreal thats all I know OK Fine its not ALS They tell me you tell me my family tells me and I believe that 98% too But its so overwhelming its hard not to think its something sinister Thats why my anxiety level is threw the roof someone I think Barbie told me the first day or second day I joined this board 19 months ago it gets better with time I wish that time would come I would rather have one leg then have this *beep* lol how bout ya all
 
Tripper I hear you loud and clear!! Been told by 3 top neurologists its benign, been 10 months but when you look at that muscle twitching away you wonder *beep* this aint right!.Still have days where my anxiety is through the roof, but take it day at a time.. but your right its still tough to deal with after all these months...but deep down i know im fine as are you.
 
G'day Brian. Sorry to hear of your ongoing concerns and hassles. It sure has got you bad bud. Mate I think you just need to hang tough. May be have a go at trying to pinpoint what is perhaps making the symptoms worse. Chart when symptoms are bad and good. Is there anything you have either done or eaten or experienced that might have contributed to this bad episode. Also when BFS symptoms are not as bad or even 'good'- what was contributing to that. The theory is to try and identify the things that make it bad and try and eliminate or reduce them. And the good things try and replicate. Distract you self as well ( keeping busy), that certainly helps me. You have had enough chat on anxiety so I am not going there again! cheers buddy , sorry I can't offer any better solutions. No one should have to deal with the sh*t you constantly seem to be dealing with.keep the chin up!cheersRodger
 
Hey Rodger Thanks for the reply yeah im not sure I have been trying to pay attention too the things I eat and do and see if anything makes it worse or not I dont know if my symptoms are worse then most or my anxiety because I seem too be the only one constantly complaining lol
 
Hi Brian, I really am sorry that things are messing with you the way they are rite now, and I wish there was something I could say that would be so magical that all this would just go away for you, I really do. I hate to hear anyone in pain (emotionally or physically) with this condition. You are not the only one complaining Brian and you are far from the only one trying desperately to cope with this condition. My phone is ringing about every 2 hours with someone who just needs to vent about it or ask questions or some even cry. I never complain about this though because I know first hand how hard it is to have and feel all this and feel like you have nowhere or anyone to turn to with it after you have done the doctor merry-go-round and still have a good handful of some freaky symptoms and be left standing there saying to your self "well what then, what the h*ll is this"?I'm rambling again, but I just didnt want you thinking that you are the only one who has not reached the level yet where you can just sit and hang out with BFS and be like "oh well". I think this takes everyone different amounts of time to reach this level. But I am very confident that you are still fine, as fine as anyone can be with dealing with this cr*p of a syndrome. You helped me out a lot when I was struggling through my dark time, and I just wanted you to know that I'm here and the board is here, vent all you want, thats what we all here for. I truly believe you are having a flair up for whatever reason, and you will come out of this soon and be able to start moving forward again, I promise :D) Stay positive Brian and know that we are here for you, and know that you will get through this.Your friendRobynn :D)
 
Thanks Robynn and I am very pleased that you seem too be doing so much better I remember in your dark time good girl for getting along Hugs Brian
 
Brian, only you can convince yourself that you are fine. The doctors can't do that for you anymore. They have told you over & over that what you have is benign and now only you can convince yourself that it's true. It took me almost 2 years to believe it also but once you do, you will feel so much better. I promise. You will get there. It just takes some of us longer than others.~leslie
 
Brian,I just browsed back through some of your very early posts and they're very similar to some of mine. I recently resurfaced on the boards after a few years of very minimal posting due to a recent BFS flare up. My twitching was preceded by other health issues/anxiety (vertigo, unequal pupils) and then one evening all hell broke loose (twitching and jerking all over). Not one day has gone by in the past 7 years that I have not twitched. Some less than others, of course.This is such a frustrating condition, with so many questions left unanswered. I've accepted the incessant calf/foot twitching, but still sometimes freak out when I get a new hot spot. For the past three months I have had an eyelid twitch and violent thigh twitch come and go. Time does make this da** syndrome better and easier to tolerate—we adjust. I've had times where I don't even notice it. But, when a hot spot pops up, my mind focuses in on each and every little twitch.You're fine. After 7 years, I know how this affects my body. I know where the twitches are and I know about how long a hot spot will last (for me, up to a month). I still sometimes get so frustrated that I begin punching my leg and demanding that it STOP. For some reason, that doesn't work. :mad: It really does help to stay busy and soon you will ignore the fasciculations. What usually sets me back is when I begin focusing in on them, researching, and then the anxiety leads to slight depression and I get in a real funk. Eventually it passes and I get back to living life.Best,Sean
 
Sean, You have Vertigo with your BFS? I was told I have Migraine Associated Vertigo. However, the migraine meds do nothing for my dizziness. Valium, however, does help. I'm wondering if the dizziness is BFS and not migraine at all, since valium is used to treat anxiety? Not that valium helps my twitching, but it does take the edge off the dizzies. I also have visuals too (visual snow aka persistent migraine aura). I've been trying to find a connection between migraine and twitching, but no luck. I'm starting to think the two are unrelated, and that I don't have migraine at all (visual snow is labeled migraine but debated as such)I have Visual disturbances ie Tracers floaters blurry snow flashing lights ect also have dizziness and vertigo and major Twitching tremors memory problems numbness tingles pains cramps ect I have had 5 ct scans and MRI of brain in the last year or two and everything is normal had 2 full eye exams everything normal
 
My health anxieties began in 2002 with a really rough bout of vertigo. Almost a year to the date later in 2003, I experienced another horrible bout. In 2004, I once again was struck with an episode and my GP finally ordered an MRI. While waiting for the MRI appointment, I noticed one evening that I had unequal pupils and really freaked out. The MRI was done in July of 2004 and came back normal. It was just a few short weeks later that the twitching started. I was absolutely convinced that I had MS at first, then ALS. In December of 2004 I had an EMG and it was normal, too. I've had a second opinion from another neurologist, although he did not conduct any testing. Early on I had perceived weakness. I used to drop things all the time and do all the self-testing. Looking back, I believe all of that was anxiety. Seven years later, I am still here—no weakness or atrophy. In fact, I finally began gaining weight a couple of years ago. When the anxiety sets in—at least for me—I struggle to maintain my weight. So, early on it seemed very logical that I was suffering from something dubious. Here's the thing: None of us have anything like MND. In the summer of 2009 a colleague of mine complained of some weakness and slurred speech—not twitching. Sadly, she passed away this past summer, less than a year after her dx. MND progresses rapidly. Sorry, I am going way off topic here.Thankfully (Sean knocks on wood), I have not had another bad bout of vertigo since 2004. For me, I tend to revisit my first self DX of MS since I have had such a myriad of strange symptoms: vertigo; tingling in hands, arms and chin; incessant muscle twitching; unequal pupils; and a false sensation of burning in my lower legs. Only the twitching has been a constant, all other symptoms come and go. Sean
 
Good post! I often find myself trying to lump other symptoms in with the twitching—partly because I feel like I may uncover some condition doctors have overlooked. My vertigo was dx as… Ready for this? Benign Positional Paroxysmal Vertigo. I will say that I will take the twitching over the vertigo any day, it is just plain horrible.
 
LOL Yeah Long lost cousins ...lol yep I have all of that stuff just out of curiosity did you ever take paxil I took paxil for 10 years and got off it 2 and a half years ago
 
I did acid like 10 times ...but my visual stuff is the same as you just said alot like lsd stuff without the hallucinations I mean by that I dont see things like animals and monsters and people that are not there lol but the colors and tracers and such are like lsd in a way
 
I have a really good friend who tripped frequently and one time he tripped and never completely came back. He spiraled out of control...anxiety through the roof. He couldn't sleep, couldn't function. He tried a bunch of different meds, most just made it worse. Finally, he tried lexapro and that helped him get his life back. It's just enough to take off that edge. Not sure what you've tried and I know some have had problems with lexapro, but might be worth a shot.
 
Funny you mentioned Paxil tripper. I took Paxil for 12 years and had switched to prozac when all this *beep* started. I then went to Lexapro, but I am convinced that the SSRI use for that long can do something. It does mess with your neuro transmitters as well as seratonin levels which have an effect on dopamine.
 
I realize this is a dead post but I can't help but relate to this. I do well for a few weeks and then I have weeks of bad twitches. I too had vertigo before this. it that started after I wen on a cruise and the dizziness lasted for months. But all my symptoms started about 1 year after I began taking insomnia medicine ambien and Zoloft. I am connived this can be a cause for these symptoms. I never had any neurological issues like this before and I am not sure how it is related. but I keep finding people who are in the same boat as me. I have found relief with diet changes but I don't think that was the initial cause so it may not be my ultimate cure. I do believe there is a cure out there for us, I only wish we could bring some better awareness to this issue. We need real research and help that we are not getting now. People out there suffer without hope because they do even know what they have. We need to spread the word and bring hope to the hopeless. There is no silver bullet yet but I would like to at least know how to manage symptoms. That can be hard when even the best neurologists don't know or really care. After all there are much more popular illnesses out there.when was the last time anyone did a run for Bfs? I don't think that just because this isn't terminal, it should be ignored. This condition degrades greatly ones quality of life and that can be very painful in so many ways. How many more could prevent this if we only knew what can cause it? I think that is a worthy cause.
 

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