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 !!!
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.
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.
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! :)
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.
Weird eye movements
Movements of muscles visible below the skin
things like seizures
and so forth
We have to document whatever we can to add to our history.
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.
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!).
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!
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.
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?
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.
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.
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.
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!
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.
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.
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
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.
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.. :(
The first time my middle toes turned sideways (they actually lifted up and turned completely sideway over the top of the other toe) I was in a cold swimming pool, shocked the crap out me when it happened and then the bottom of my foot went into spasm.
Hi- I am part of this space in time--- I tired setting up an appt. today and it failed simply over my doctor's opinion for a referral to see a Neurologist because she can't seem to remember the visit and purpose why I wanted to go and set up an appt. I was shocked and suggested to make an appt to come and see her, she resolved the situation by telling me I am fine and won't give me a referral; and asked if went to see a psychiatrist. Which was odd because I was standing in front of his building to see him for my first appt. Well let's see how long my road of experience will slowly or quickly turn into the road controlling my mind and body long enough to seek a solution and proper evaluations to thoroughly find the right ways to understand my body and eliminate quickly whatever that is not a solution to a speedy recovery or understanding of my body and what it controls on it's own. because I already been through this road in California for the past 4 years and had to break up with my fiance and move back home to the east coast to take better care and gain enough information to fix my problem I am diagnosed with endometriosis and for some reason I have all the symptoms nothing has changed from time of me moving from California to my home in the east coast and for some reason they clearly can not see it for the first time patient groups of people. It's difficult to constantly struggle with making a simple establishment between the patient and doctor and with their establishment.
hi i also have these problems, twitchy mucles, fingers moving on their own lol, eye twitchin weird to where it feels like someone is pulling them at the sides lol but that dont happen as often as the fingers and toe thing. when it happens in my feet its always the fourth toe on my right foot and it hurts so bad. it use to last a couple of seconds now it has gotten to where it feel like it is not going to starighten back up very scary stuff. Had it happen the other day and lasted for about 15 mins i didnt know what to do. so i can truly say its not in your mind and that i can feel your pain.
Hello, This is my first time on this thread. I found my way to this site because I have also been experiencing my toes going deformed rigt in my face. I have had the same thing happen to my hands. But when it happens in my hands, I am usually sleep and awaken by the pain and numbness. I can see it, but I feel my hands twisting and turning. I also feel retarded when this happens. I have been in the bath tub watched my foot turn like someone is twisting and turning on a shirt trying to get all the iwater out. I can usually press my foot against something and get put it back into shape and the pain will go away when back in shape, but it is getting harder for me to quickly relieve the pain. Last night, this happened and I had on my sock. I took the sock off and low and behold. I big toe was moving inward and the toe right beside it forced itself in the same direction and came to a rest against the big toe. The middle toe remained in place and the other toes shifted to the other side. Painful is not the word to use. But I was able to get a picture of the toes at rest. I will figure out how to upload for all to see. My systems are as follows: first started in the hands, next in one foot and overtime to both feet. I have numbness under both feet, the toes are numbed the most and goes as far as to the ball of my feet. The numbness has not gone away in over 2 weeks. I finally go infection in my both my feet and moved up to my calves. My feet hurt. And my legs hurt. I get cramps to the point that I can get up to use the bathroom. One morning I got up with a big dent in my leg, just as though someone took a stick and pooked a hole in my leg. It was very deep and stayed that way all day. Can someone please help. The cold seem to bother my condition more. I am tired of going to the doctors office and getting that look like, what do you want me to do. The doctors don't know. I hope someone who has been dianosed with give me some relief and tell me what the heck is this condition called. By the way, I can barely type with note because my hurt like crazy. Thanks Barbara
Hi i actualy feel like im going crazy all the doctors said it was in my head. I have even been diagnosed with mentel disorders e.g bi-polar becauae the pain is that excrusiating i cry iraticaly and jevwr no what to do and because i have no diagnosis i havent been told how to deal with the pain. Im 19 now i have reall painful cramping in my 3rd and 4th toes to the point they automaticly join togethor and only myself can physicaly separate them but even then they are still drawn back togethor again. I first expierenced these pains when i was around nine years old. It has disrupted my life imensly to the point i can walk no further than a gew feet without sheer discomfort and pain :( i have NEVER met anyone with the same sensations as me also my foot is constantley cold. After reading a few of your stories i can only hope one of you or indeed anyone could please give me helpnor advice to what my pains me be and if possible a sollution that you know of or have hurd of, even a predictable diagnosis would be most appreciated and welcomed. As i myslef and and many proffesionls over the years havent yet managed to diagnose or treat. Its fustrating, sad and really painful. I also would like to add im not concerned in getting a "proffecional" or "PC" answer. Alls i know is any help right now will be very useful many thanks Karima
I have this too for as long as I can remember. I'm 43 now but I can remember getting foot spasms from merely pointing my toes as early as 11 years of age. In the last few years it has gotten progressively worse. My toes spasm, followed by my foot and then my calf muscle, most often on the left side . Lately, I've been experiencing numbness and spasms in my left arm and the left side of my face. It can be both painful and irritating. I know from brain MRIs done for headache complaints that I have a nice size arachnoid cyst in the temporal region on the left side of my brain as well as a spot on my pituitary gland, both of which, according to the neurologist aren't anything to be overly concerned about.
I also get these spasms when laying down and relaxing mostly but I can bring them on voluntarily by flexing a certain way.
Quite frankly, I'm just happy to know I'm not alone in this.
It started with my toes twitching and moving on their own, then my hands joined in. Now my entire foot will fling. My left arm and hand is numb. I went to the Dr and he claims that I have carpal tunnel in my arm (just by looking at it) and my blood tests indicate that I am low in magnesium. I am taking 800 mgs a day for the next 2 months. I hope this is will resolve the problem. Keep ya posted.
I have had painful foot cramps for years. Sometimes it literally stops me in my tracks because I cannot pick my foot up off the floor, even with shoes on. I have recently started have calf cramps that will draw my foot sideways. Standing on it doesn't always relieve it. It is more painful than the foot and brings me to tears. I fear this happening while driving. Are these common to MS?
I also have the very painful Toe and foot spasms when I am resting both right and left feet)...resently my right calf joined in and contorted my leg, foot and toe...moving my leg and foot . I must admit it was freaky watching my lower leg move around all by itself!
I am so glad that I am not alone with this problem, but does anyone know what causes this crazy toe twitching? Are we lacking a vitamin or mineral? Do we need to exercise or stretch before doing certain activities? Someone please help us!
Uncontrolable toe and foot movements are a constant for me at night. From what I understand it is normal in ms. It took me a while to get used to it, but eventually it happens. So good luck, and I hope yours go away!
omg i never woulda thought that this was a condition other people would have brought up on a site.
Sure, i never believed i could possibly be the only one suffering from this problem, but i didnt know it was this widespread!
I have this problem mainly with my toes, but it can pretty much happen anywhere on my body. I am looking it up now because i had it happen under my chin when i tried to keep my mouth closed while yawning.
To tell you the truth, i seem to find that its much more painful if i was doing something that instigated the spasm. Sometimes if i crack my toes, they just keep going down, and down until i pull them up with my hands. I am too afraid of what could happen if i dont stop my toes from going down. It feels like they would keep bending until they snapped off!!!
My toes are the only thing that spasm on their own, at least i think so. I will definitely take note of when it happens a lot more now that i know other people suffer from it lol. Its such a stupid problem, how do you even get help for it? i never asked anyone because the explanation of the symptoms sounds like madness. "Sometimes my toes keep bending downwards until i pull them back up with my hands, it hurts a **** load" people would stone me. With big rocks!
I attended a seminar at my MS clinic recently. It was presented by a PT affiliated with the Mellon Center for MS (Cleveland Clinic Foundation). He mentioned this problem of spasticity of the toes and offered a potentially simple solution.
Toe supports! They are a gel or felt pad that bridges the area under the toes where they attach to the foot. They can be purchased for less than ten dollars at drug stores or in various foot care catelogues. I've ordered some for myself. I hope they make walking more comfortable!
I have had this happening in my left foot for 5 years pre my MS dx. Homeopathic "leg cramp" pills at bedtime helped for several years. The past year the foot cramps and twisting, fascilations and toe twitching has become daily and not just at night. My other foot started doing this too. It got so bad one day at 5pm that I went to the ER. They started me on a low dose of baclofen. My neuro has kept me on it at bedtime and it stops the cramping. Every so often I have to take a baclofen in the daytime too and may have to up the dose, but right now I only take 10mg/day. My EMGs are normal and the podiatrist says it s neurological. It is very painful and getting worse. I didn't have any visible lesions on my spine but there is some non-ms stuff going on in my spine. I had a spine neuro look at the MRI, and he says there is some narrowing on the cord at the lumbar level that could be doing this. It is related to drop foot or charcot's foot.
Hello everyone. I am so glad to see that I am not along with the toe dancing. My toes to my left foot have been twitching for 2 years now and it has interfered with me sleeping at night. There is no pain involved but the twitching is really bad and it affects the ball of my foot as well. The twitching starts with my little little toe moving inward to the 4th toe and then the little toe and the 4th toe will start to move outward. The next thing to happen is the ball of the foot and the remaining toes start twitching and keeps me up all night sometimes. Once again, here is no pain involved but the twitching can be very intense and weird feeling. I wish I could try Botox just to paralize the muscles to see if that would work.
OMG it is so refreshing to read this and not feel alone!! My toes and foot have been spazzing periodically for a couple of years. The last six months or so, the calf gets so stiff.. It is so incredibly painful. It always occurs when I am lying in bed. Sometimes it wakes me up. I can feel it coming on and try to relax completely and occasionallly that helps. Mostly, I end up having to get out of bed and walk it out. I walk all around the condo. Last night, I was screaming and moaning and woke my husband. Yes, he has slept thru the others!! LOL.. Couldn't hear me moaning like I was dying? That's reassuring NOT. Anyway -- the past two months I'll have eye twitching in my left eye. Just all of a sudden for no reason, any time of day... Not sure if they're connected. I've never even mentioned any of this to my doctor, tho I visit him every 3 months. Sometimes I'll go a month and nothing happens so it's not always on my mind. It's not a daily occurence. Maybe three times a month or so. And I think, subconsciously, I just don't feel like going thru a bunch of tests. I think I'll mention it next time to see what he thinks.... Thanks for sharing because now I know I'm not alone!! and boy is it PAINFUL !
Same thing has started happening to me. I liken the feeling of side leg pain to shin splints on the side, but I'm not running. Wakes me up from a deep sleep. My right big toe pops up and I'm groaning with pain. Thought I was crazy. At least now I know I'm not alone.
I am having the same thing with my toes. My rheumy had no idea what it was but suggested low potassium levels. I notice that I have stumbled into an MS room, but I have never been dx with MS. I have Osteo-arthritis and fibromyalgia...interesting.
i have about the same things happen to me.i dont respond to these much.but you just made me laugh so hard,when you stated ..yes your husband sleeps through this... i get it completely.have u found out what is wrong yet??me either.lol. ***@**** if u want to talk.mot making fun.i just needed a laugh.pam
i tried to send my info to u.dont know how this works.im OLD 60.LOL.but anyway you seem to have a sense of humor.im not a strange person.just talking.dont know if u can give info or not as i said. but pamj533 .and i have charter.pam.
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