Constant Twitching and Tension in right leg

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Constant Twitching and Tension in right leg

Postby Wells05 on April 12th, 2011, 1:16 pm

Here is my story! My Twin sister had a baby 3 years ago. Shortly after the baby arrived she noticed her stomach muscles twitching when laying down. She then googled twitching muscles and what pops up but ALS. She then went into crazy mode just like I am now. Freaking out for almost two years, I kept telling her she was crazy and why would she freak out about twitching muscles I said I get them but don't pay attention. I basically kept telling her I don't want to hear it anymore and she was in the worst frame of mind how sad I didn't understand. Then I was getting ready to have my baby in July 2009, my sister say's to me please just look at your calf and see if it twitches I was like UGG please stop this so I looked and sure enough it twitched. I about lost it I was like What does this mean, so I googled it myself and freaked out. I then started obsessing, measuring, testing my strength, on and on. I was TWITCHING FROM HEAD TO TOE!!! I was a mess and just had a baby. I got Phemonia and Mastitus (breast infection)! I kept calling the neurologist over and over. I would have a twitchin in my lip for 2 day's, in the pinky calf of my hand for almost 5, calfs CONSTANTLY! I can even see on the top of my foot and it will make my middle toe move. My neurologist in Oregon Say's I DO NOT have ALS. he kepts telling me this but I can't get it through my head. I have seen many doctors too! I'm on celexa to calm down but its not helping. Do I turn myself into a Hospital! Its now been almost 2 years still twitching and my right leg feals stressed when I walk. But if I relax and not focus how I walk It seems to not be bad. I'm not sure if I think all of this up in my head? I can skip, walk on my heals backwards down the stairs, nothing has changed mabye its just my mind. My dr say's I'm going to put myself in a wheelchair if I think hard enough! If anyone has any suggustions I would love it, I want out of the horrible fear.
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Re: Constant Twitching and Tension in right leg

Postby dARR on April 12th, 2011, 1:37 pm

Wells05 wrote:I can skip, walk on my heals backwards down the stairs,


wow, you are waaaaaay more likely to become paralysed doing this.
After two years and a doctors say so you are just fine! You need to get your thought patterns under control maybe...but there aint no way that you have any type of mnd.

-Simples-
He who fights with Monsters might take care lest he thereby become a Monster and if you gaze long into the Abyss the Abyss also gazes into you. Fredrich Nietzche, Beyond Good and Evil
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Re: Constant Twitching and Tension in right leg

Postby mommylondon on April 12th, 2011, 1:52 pm

Hi and welcome to BFS. All I can say really is YOU DO NOT HAVE ALS, PROMISE YOU DONT :D . You do sound like Classic BFS, through and through. It sux, its annoying, but it is NOT killing you. YOU are NOT dying. Your doctor is rite when he made the comment that you were going to make your self sick if you didnt let this go. I am proof of that theory. I was so convinced I had MS just because of the twitches and my reflex issues, that I really began to have issues with walking. I still have issues with walking to this day a year or so later. My legs feel clumsy and awkward when I walk. My left leg is always tensed up feeling and feels weak, but I can still pass all the strength test that a neuro has you perform, and I have never fallen or tripped even once. Never underestimate how strong the mind is. I never had a tongue twitch with this syndrome untill I started helping a newbie on here who was having a constant tongue twitch, and low and behold, my tongue twitches all the time now.

Just hang out here instead of the other sites that will only raise your anxiety. Theres lots of support here.

Take care and we are here if you need us.


Robynn :D
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Re: Constant Twitching and Tension in right leg

Postby bfshopeful on April 12th, 2011, 3:00 pm

It is not all in your head, even if it is your head that is creating most of it. I know stress plays a big roll and it usually happens around a time of great stress, i.e. having a baby. Even good stress can be bad for you. Checking yourself into a hospital will do absolutely nothing. If they could find the problem and fix it I would have done that 2 years ago. The doctors dont know what is wrong with us. The only thing I can do to give you peace of mind is usggest you research some posts around here and know that you are not alone and the second is the Mayo Clinic study where they followed 120 people with BFS for 30 years and not one ever developed MND or any other neurological disease. I personally am having the worst week of my life with this shyt, except for when it first started. I know your pain and your need for answers. I wish I had them, but you are not dying. Just need to learn how to cope until it goes away. My guess is that it will leave like it came.
"It's mind over matter. If you don't mind, it don't matter."
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Re: Constant Twitching and Tension in right leg

Postby Wells05 on April 12th, 2011, 5:47 pm

Seriously you could be nice about this! I agree I'm a mess but Geez don't be so harsh!
Last edited by Wells05 on April 12th, 2011, 5:53 pm, edited 2 times in total.
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Re: Constant Twitching and Tension in right leg

Postby Wells05 on April 12th, 2011, 5:52 pm

Aw thanks so much for the nice post, I really appreciate you taking the time. I probably sound nuts but I'm just a normal mom married with two little girls. Life has been so awful worrying for almost two years. Its nice to know I'm not the only one going through this though I HATE to see anyone else going through what we are. I don't wish this on anyone. Your right on how strong the mind is, it can do crazy things. The dr said to me at one point,Lay in bed and think about spiders pretty soon they will be crawing all over youl. Thank you again for your nice message :)

Ps..... I'm new to this websight so I'm not sure If I'm responding correct :)
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Re: Constant Twitching and Tension in right leg

Postby RandyR on April 12th, 2011, 6:08 pm

Wells05 wrote:Seriously you could be nice about this! I agree I'm a mess but Geez don't be so harsh!



Just ignore the posts that sound harsh, some folks seem to forget they were right were you are not to long ago, if they were not they would not be here at all... Sometimes tough love is not the answer.

BFS is a scary thing even if it is benign, but you will get kinda used to it as time passes. But just remember what bfshopeful just said, your not dying!! :D Hope you get feeling better soon and God Bless you.

Randy
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But they who wait upon the lord shall
renew their strength; they shall mount up with
wings as Eagles; they shall run, and not be
weary; and they shall walk, and not faint.(ISAIAH 40:31)
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Re: Constant Twitching and Tension in right leg

Postby glitterwater on April 12th, 2011, 9:35 pm

Maybe see what your doctor thinks about switching medications or upping your current medication? This stuff is really trial and error, and what works for one person doesn't work for another. Did anything help your sister?
"O Lord my God, I cried to you for help, and you have healed me." Psalms 30:2
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Re: Constant Twitching and Tension in right leg

Postby fox2run on April 14th, 2011, 2:20 pm

BFS unlike ALS is usually triggered by births. I had mine shortly after my 2nd child. Read the stories about stressed out dads and pregnant women. Soooo many of them here.
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Re: Constant Twitching and Tension in right leg

Postby Wells05 on April 14th, 2011, 2:33 pm

Thank you Fox2Run! Its nice to hear other had this happen after having a baby. I twitch non stop and it just sends me over the edge. Especially in my shoulders I freak out or my hands :(
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Re: Constant Twitching and Tension in right leg

Postby TexOldCarGuy on April 14th, 2011, 5:01 pm

Wells05 wrote: I twitch non stop and it just sends me over the edge. Especially in my shoulders I freak out or my hands :(


Been there, totally understand. And I can tell you that if I had a flare up tonight, I'd probably stress out a bit myself. Not because I think I'm going to die... I'm way past that. But lets be honest- its stressful to FEEL THE TWITCHING, isn't it? Its an aspect of not being in control over something that you've HAD control over as long as you can remember. Admitting to myself that I get angry and stressed just because I don't want to twitch actually helped me.

My suggestions: 1) DISTRACT yourself. You have a new family, go enjoy it! Find things to do that don't stress you (and yes, I remember that a new baby actually is pretty darn stressful at times). But focus on the up-sides Take photos, scrapbook, go for walks (and the exercise will help too). 2) talk to your neuro about medications that might actually relieve the symptoms a little. In my case, Xanax and Klonopin both worked, both to reduce the twitches (a little, not tons) and de-stress me. One dose has almost always been enough to knock me out of the cycle, and trust me I'm very paranoid about becoming dependent on ANY med. My neuro had to kinda work on me a little at first to convince me that I could just use the meds to break the cycle. 3) remember too, you have an understandable, documented, clear trigger event that us guys don't: your hormones just got shaken and stirred BIG TIME!! That will sort itself out over time, and as it does you will feel better! That is by no means trivializing your problem, its pointing out that you can hang on to that fundamental truth when you think the twitching's gonna drive you nuts.

Oh, and maybe the best suggestion of all: Take a few hours or even days and read AS MANY POSTS on this board as you can. Recognize that there are people out there who are living with EXACTLY what you are! You're not a freak. Finding this place may have helped me more than just about anything else. As I said in another post, its all well and good to have a doctor say "trust me, I'd TELL you if I thought this was bad." Its entirely another to hear DOZENS of people say things like "my thigh has twitched for a year, but I just don't notice it anymore" or "I get this feeling like there's a cellphone on vibrate inside my leg."
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Re: Constant Twitching and Tension in right leg

Postby Wells05 on April 14th, 2011, 5:14 pm

Oh MY GOSH YOU SAID IT PERFECTLY! I get this feeling like there's a cellphone on vibrate inside my leg, I GET THIS ALLOT!! I get weird things! Thank you so much for taking the time to write to me. I try to distract myself so much, this is just the hardest time in my life. Its funny though my Nuero doesn't think I'm a person for medicine he thinks I will freak out on anxiety pills and do the opposite. He see's me every three months so I feal better and re assured. He actually said to me last month, wow ashley you made it almost 3 months with no phone calls. I see him again in June. Then I think he won't need to see me unless I insist. He diagnosed me with a nuerosus. He said go home and exercise! I ask him over and over are you sure I don't have ALS he shakes his head, Yes ashley you don't have ALS. I say can I record you, he is like now get out of here. I like my neuro allot, he understand me and how I'm fealing thank god. He jokes with me but I'm thinking, hello I'm not joking here this is real to me.
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Re: Constant Twitching and Tension in right leg

Postby sharon slack on April 15th, 2011, 4:21 am

Hi,

I think everyone twitches, but we twitch ALOT, and this leads to us being very aware of every new thing
happening to our bodies, which increases the stress which causes even more symptoms.

I used to argue against the stress scenario, but it does make it worse. I just know that my BFS was not
initially caused by stress.

If you have seen a Neuro then that means their is nothing showing to cause alarm. Some of us including
myself couldn't be convinced and turned into a right nut job for far far to long. :? But here I am 10 long
years on still twitching like a champion but not incpacitated in any way. ALS is a bloody frightening disease and
I understand why people are terrified, but its also not common and aches and pains, twitching, weird buzzsing
sensations in our muscles doesn't mean we have it. I have had them all. I cant explain why but just to reassure
you it doesn;'t mean you have a serious condition, just very annoying and disturbing to your mind if you let it be.

Hope this helps a bit
Sharon
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Re: Constant Twitching and Tension in right leg

Postby raindog on April 15th, 2011, 6:01 am

sharon slack wrote:Hi,

I think everyone twitches, but we twitch ALOT, and this leads to us being very aware of every new thing
happening to our bodies, which increases the stress which causes even more symptoms.

I used to argue against the stress scenario, but it does make it worse. I just know that my BFS was not
initially caused by stress.

If you have seen a Neuro then that means their is nothing showing to cause alarm. Some of us including
myself couldn't be convinced and turned into a right nut job for far far to long. :? But here I am 10 long
years on still twitching like a champion but not incpacitated in any way. ALS is a bloody frightening disease and
I understand why people are terrified, but its also not common and aches and pains, twitching, weird buzzsing
sensations in our muscles doesn't mean we have it. I have had them all. I cant explain why but just to reassure
you it doesn;'t mean you have a serious condition, just very annoying and disturbing to your mind if you let it be.

Hope this helps a bit
Sharon


Well said Sharon ...i can only add the more you natter the worse the twitches, as i think worrying dumps substances like Adrenaline into you body which imo interferes with signals etc and causes an in increase in your symptoms.

Take time to enjoy your life, get an hobby and get outdoors. :D
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Re: Constant Twitching and Tension in right leg

Postby Wells05 on April 15th, 2011, 5:11 pm

Thank you so much Sharon, so lucky to have found this websight!
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