Do your toes move by themselves causing spasms??

[Tammy826]

I know thats a weird question but this happens daily with me & its getting worse. I can be laying down watching tv or whatever & usually its 1 or 2 toes will move down(not the rest of them ) & then I have awful spasms in my foot & up my calf muscle. At 1st my Big Toe would move out sideways from the rest of my toes & then the spasm would hit but now it can be any of my toes. The Dr. just looked at me like I was crazy but can you move just one toe (especially one of your middle ones & not the rest?). Right before the spasm hits I get a feeling in whichever toe(like a pulse or shock) then the toe move & the spasm hits. I woke up this morning with pains shooting in my feet so thats a new one but the spasm thing has happened over a year & getting worse. It used to be only when I was trying to relax now I can be sitting up or even standing. Its tooooooo strange. You can also see other muscles moving under my skin at times (looks like a wave under my skin). When the moron e/r Dr. basically said it was all in my head my family told him it must be in their heads too because they watch this happening. I have twitches & the zaps & zings also but does anyone else have this happening too?? Does anyone else wake up with their hand drawn into fists to the point it leaves indentations in your hands?? Please tell me I'm not crazy as I plan to print my replies to this post & take them to my Dr. Thanks !!!

[Lulu54]

Hi Tammy,
Yes, I have the painful toe actions.  I call if the Vulcan Salute, because my great toe actually moves away from the other toes. It seems to only hit when I am relaxing and have my feet up - it does stop if I stand and bear weight on the foot.  This is very painful.

I also have the spasms in my right calf - I can watch the movements .  It feels like there are worms crawling under my skin.  It doesn't hurt - it is just strange.    This happens regardless of what position I am in -standing, sitting or supine.

You are not crazy - these are both very common.

be well,
Lulu

[Lulu54]

I should have added with the toe problem, it also sometimes affects the other toes too.

[Mustang0064]

I too have the same thing.  I like your term Vulcan Salute..you hit it right on.  Never even gave it a thought that it might be the MS.  Thought it was my work boots.lol

[jensequitur]

My big toe will stand straight up - quite painful!  And then the other toes will pull themselves down toward the sole of the foot.  I also get cramps in the bottoms of the feet, although not recently, thank goodness.

[slightlybroken]

I have the same problem. Especially the "Vulcan Salute". I have my husband grasp my toes and squeeze them back together. It seems to put things in order and stop their mis-behavior.

My fingers will do this as well as other body parts. Weird stuff!

[Tammy826]

Yes it is strange to feel you don't have control of your body!! Thanks for your responses...at least now I know I'm not crazy lol!!

[Scarface432]

I am experiencing this in my foot since my childhood. My doctor told that my nervous system is too weak and that was the reason this is happening. SO, he asked me to take good diet. Now I'm 29, I still experience this when I sit down, do Yoga, and other activities.

[supermum_ms]

I dont know if what i experience is the same but its probably very close, i've had this for years and years. It happens more when i am lying down but its can happen anytime now, my calves start to feel tighter and tighter, then the pain will hit in my feet and calves. The toes split, the abnormal babinski's reflex of the big toe being up when the other toes are down is happening, sometimes its one sometimes its both.

In truth nothing i do helps or stops it, it seems to be a wave of pain that i have to ride until it passes. I usually grab my toes with one hand and the arch of my foot with the other and try and force them back to normal, holding tight whilst the foot is trying to go back to the split. The calf muscle is hard as a rock, the foot is arched and often slightly twisted and the big toe is up with the others stuck down, its painful and an un-natural action. Its easier to cope when its just one but when its both, boy does it hurt!!

It happens more often when i am asleep, it wakes me like i've been hit with a cattle prod, i have something similar happening to my knees and my left hip will tighten up and then lock into a weird position, again its a wave of pain that ends just as suddenly as it began. My DH for years has noticed my feet will twist on to there outside edges, foot curled and the arch tight (sort of pigion toe), he'll flatten them out but i dont know this is happening, they seem to tighten gradually un-beknown to me, it drives him nutts.


The only explanation i've ever been given was 'probably' low sodium levels, i obliged my chip desires to eppic obsession and still no change in my feet, gave up salty chips cold turkey, I was desperate. [ROFL]. I think i would stand on my head, quack like a duck whilst blowing bubbles through my ears if my Dr said that would solve the problem of my feet, hmm i might give it a shot! :)


Cheers......JJ

[Quixotic1]

Yep!  Count me in here, too.  On my bad leg my toes start to quiver independently of each other.  Usually its my 4th and 5th toes that start moving out and in.   Initially it's kind of interesting, but it leads to a painful spasm in the bottom of my foot that I have to manually break.

I suggest that you take a video of the motion so that future moronic docs can see the action.  We have suggested this many times, but for any symptom that is visible it is advisable to be able to show the doc a video.  Not only does it validate your history, but sometimes seeing the problem will allow the doc to give it a name - and maybe a diagnosis.

Things like:

Weird eye movements
Movements of muscles visible below the skin
jerking motions
nystagmus
things like seizures
funny gaits
spasms
tremors
and so forth

We have to document whatever we can to add to our history.

Quix

[Tammy826]

I keep trying to video it but I never can catch it lol!! I guess I'll take my camera everywhere with me lol! Its good to see you back Quix!!

[supermum_ms]

This is a good and simple explanation of muscle spasms and cramps, worth reading.

http://neurology.health-cares.net/musle-spasms-causes.php

Now about the recording of these often strange and difficult to discribe events, when they are happening i cant imagine being able to calmly locate the camera, turn it on, point and shoot straight enough to see the problematic limb(s) whilst i'm thrashing about and screaming. At the time i'm thinking of nothing but the pain cheifly stopping the pain, i think i'd have to move into the big brother house or rent someone lol.

I have had the odd day time everybody gets at sometime in their life 'foot cramp' but what i experience then is remarkably different to what i tried to describe in my other post, totally different feeling.

Be warned at the rate the migraine dx is happening at the moment this could be just another sx of migraine lol.

Cheers....JJ

[Tammy826]

LOL I agree & the dx of migraine
has already been tried on me. The newest brain fart (for lack of a better word) is fibromyalgia....ugh again.!! This is the 2nd time they tied to diagnose me with fibro! I pointed out that while I do have tender spots , they are from the neverending spasms & most people get sore after having spasms! My sister inaw has Fibro & she can walk & doesn't mess in her pants nor does she have brain lesions. Who knows before this is all over mabey I'll try for a medical degree myself in the field of neurology since it doesn't require a great deal of common sense (no offense to the good DRs. out there!).

[supermum_ms]

ROFL!!

I've been thinking of starting a post called "the stupid things a dr told me" we could all do with a laugh. Seriously you should of seen me laughing my head off last night, my cheeks hurt, my stomach had a workout and i was snorting like a piglet. The subject was far from funny but it was what this poor lady had been told by her dr(s) when she questioned her dx of leprosy and the truck load of pills each of them was making her take, that tickled my funny bone.

Said by her neurologist: I dont want to do a biopsy because if its negative I will have no further answers of what to do next, translation I wont know whats wrong with you if the test proves i'm wrong! Gee i wonder why she's questioning her dx of leprosy.

Said by her dermatologist: He says that Pain / pricks are good development and that Painful conditions are always preferable to Painless conditions as it warns a human being. Note she didn't have these sx before all the drugs she now takes for leprosy.

Said by her psychiatrist:medicines can work only based on trust and she should not try to do research thats not connected with her proffession. Note this was said because she is questioning her dx of leprosy because all her tests for leprosy are negative, it seems theres something wrong with her mind for not wanting to have leprosy.

Translation: You need to trust us, we know what we are doing we are dr's, if you dont trust us your truck load of pills wont heal you of the leprosy we think you might have, say again!

If you dont see how rediculas and funny this is, then i might be one sick puppy lol!

Cheers........JJ

[badgirltxk]

I have to say.. I love you guys! I so needed to read how miserable you are. I know how horribally corny that sounds... but knowing that your going through the same emotional and physical whirlpool i am, i'm sure you can relate. I wasn't sure from one day to the next if i was nuts. If i didn't drink my orange juice so need that vitamn or maybe i forgot that yellow banana or the 10 glasses of water or maybe i walked too much, no wait, i didn't walk enough..! I just want to pull my hair out sometimes i swear. I have every symptom plus some fun extra's. I would love to hear anything your dr comes up with. My dr has been runing tests. after tests. just like the dr before and the one before. I finally asked my dr ... to be blunt with me. I asked.. in all honestly.. this test was negative.. which means were kinda just grasping at straws. Told him not trying to belittle him.. just wanted the... low down so to speak. I mean .. i'm the one getting nerve shocked test and spinal's and mri's. He looked at me and said the something i for once believed. He said... we have a few straws out of the bag elimated..but yes.. bluntly.. we are drawing straws. Well... maybe if these dr's will alll draw straw's together and share some info... i could lesson my bag of straws from the 100pk to maybe like the ten cute loopy ones. And yes. I sound nuts. Half the dr's think i am anyway. Might as well humor them. They seem to be just humoring me.

[twist330]

My 3rd & 4th toe do the Vulcon Salute thing on my left foot but this is a now perminent feature. All my toes twitch together on one foot or the other maybe 20 times a day.

While I was at the neuro Physio, she was examing the Vulcon Salute,  while doing so, my little toe did a bit of body poping constantly.

So in answer to your question YES!

[adnilorotrot]

My right arm curls up (after a very painful feeling down my arm) and i can't control it.  It hurts very badly.  Also, from time to time one of my feet will begin to have great pain, and then the toes all separate sideways, and my foot twists to a weird angle.  An EEG revealed that I have some activity in my left temple that suggest a brain injury.  They have put me on anti-seizure medication that stopped the arm fromcurling up, but I consistently have the pain/electric-type sensation that usually precedes the weird movements.  I have wondered about carpel tunnel syndrome, or something else....  My neuro says it is seizures....  any thoughts?

[COBOB]

Carpal tunnel would effect the 3rd, 4th and 5th digit.  To me, it sounds more like a myoclonic seizure or a focal dystonia.  I think you neuro is on the correct track if they can see the activity on an EEG.  If they can see it on an EEG, it has to be a CNS generated problem.

Bob

[whitecloudrising]

Hi Tammy,  I just wanted to let you know that you are not alone, and it appears that many people suffer with this toe and foot problem.  I just happened to experience it about a half hour ago and is what made me look it up on the internet.  When it first started several years ago is was just the big toe and the one next to it, they would raise and twist on top of each other and the only thing that would stop it was putting my feet flat on the floor.  As the years have gone by it has gotten worse and is happening to both feet at the same time, and as others said mostly when you are lying down.  But now mine happens any time and now it starts at the bottom middle of the foot.  First it becomes hard like a piece of metal and the foot begins to twist then the toes start and putting the feet on the floor causes very bad pain when it starts in the middle.  What I have noticed that gas may be a possible cause.  It will go away for a while, but it appears when I eat a lot of fruits and vegetables which cause me to become gaseous, then the feet start.  As long as I relieve the gas properly and it does not build up in my body, I do not have the problem.  So I started last week on one of my more fruit and vegetable binges, which happens last night and this morning?  The gas has had a week to build up in my body from the fruits and veggies and what's back is the cramping, twisting feet.  So I belive the possible cause is the gaseous food we eat.  

[agalindo52]

If you have not found a new doctor yet, I suggest you do so.  I too have my big toe moving sideways, cramps in toes, and movement under my skin.  

Your provider should be taking notes of this.  There are medications to help with these things.  I know having to take another medication is a lot to ask.  But we need to keep moving and hopefully slowing the progression of this horrendous disease.  
Good luck to all.

[SarahL2491]

darn, move over Spock, I've joined the enterprise too.  I was just showing DH last week that my toes were doing their own little line dance and not all going the same direction thus screwing up their line dance dramatically.  

one of the reasons I love this forum, I learn more here than from my doctors!

[luvnGod]

Wow, I freel so much better knowing that it's not just me.  This happens a lot to me as well.  HUrts so bad when it happens!  It's like my muscle just decides to spasm or tense up and it pulls my toes in weird directions.  Seems to happen more when my muscles are tired or overused.  

[twopack]

It's so nice of you (and others revisiting this thread) to be concerned and offer support but Tammy posted this concern two and a half years ago.  She wasn't actually diagnosed until August 2011 though so hopefully she will stop back around here and update us on how this turned out.

I would think the original toe movements are a result of muscle spasticity.  They may be inspiring neighboring muscles to join in or simply be the starting spot in a process that misfiring nerves have already put in motion.

It was this type of spasm that got me started on regular doses of baclofen - and then a baclofen / gabapentin combo.... not to mention a PT developed regimin of spasm preventing stretching exercises.

Mary

[SarahL2491]

but mary if any of us learned anything or gathered others in our corner thanks to the forum reposting this (I found it at the top of my forum page)
then it was not in vain.....and perhaps we were meant to find it..........stranger things have happened in the universe of time

[twopack]

This "came to the top" when someone's answer bumped it to that position.  Since we always have new members exploring the forum there is little doubt resurrected posts have a timely feel for more than a few people.    

It's always wonderful when members learn from the experiences of those who have traveled the same road.  I'm just reminding everyone to try to take notice of the date that topics first appeared.  The little hour glass is a big clue that a topic was started some time ago.  Older posts contain older info by their nature.  When dealing with MS that can also mean the content is outdated or incorrect (even though it didn't here).  

And I still hope Tammy isn't still searching for a solution to this particular problem.
Mary

[Gina_Maree]

I have this problem :( half my body tightens yp and i curl up, its like im in pain but really i cant move it. I feel retarded.... It happens to.me when i walk? Its been happening to me for years its getting worse. My arm even curls up and i feel like a freak. My friends ask me whats wrong i say oh just a cramp but really my bodies numb i feel socially challenged because of it.. :(