My leg gave out

[Mya Symons]

I haven't had this problem, but my husband has. So far, he has managed to catch himself. I have a problem with my leg kicking out (involuntarily). Once I was leaning on a counter talking to someone and I kicked the counter really hard. It was very loud and hard to explain. I told them I slipped and they believed me. I am getting to be a pretty good liar, unfortunately.

 

[Dainty]

I can get my legs (with me its both of them), giving out suddenly at same time (like as if someone suddenly took your legs away) without warning thou it only happens if Im tired and done a bit.

Yes, for me too all the times it has hapened are when I've overextended myself. It really is as if someone suddenly just took away your legs.

Come to think about it, its basically the equivelant to what I can get with my hands.. hands suddenly giving way and a cup can suddenly drop from my hands. (I end up smashing a lot of things). I guess others here also would be getting it with their hands too.

I get that issue with my hands too. I can be holding something and my hand just involuntarily relaxes suddenly and there's nothing I can do about it. It doesn't happen very often with me, but when it does it's really annoying.

 

[Ever Hopeful]

Jemal - I had the same feeling you did in my left leg also - it lasted about 6 hours where it felt like I was walking in space on my left side - I held onto the walls and crawled so I didn't break anything that time, thank God! I think it is sooo weird that the left leg seems to be the problem side with many of us. I haven't had any problems like that with my right side, although I have had very bad muscle spasming/twiching on both sides of my body, had limbs go numb etc.
So sorry to hear you broke an ankle - ouucchh! Hope your ankle mends as quickly as possible for you-

 

[Dainty]

One interesting thing to note about the left side thing is that I've always known my left hand to be weaker than my right (I'm left-handed, but for tasks requiring strength I become right-handed) and when I was seeing an acupuncturist she would always comment how the pulse of my left wrist is weaker than the one on my right. Normally it's the other way around because the heart is on the left side (well, usually. No, I don't have that wacky condition where my heart is on the right side).

I'm curious now about this left-sidedness thing. Though again for me the sudden leg weakness has always been both at the exact same time.

 

[taniaaust1]

I just came across something just a little earlier tonight in which I thought may interest those on this thread. Its the first time Ive seen a ME expert mention the leg giving out symptom or for those who also have it.. the hand giving out. The following expert testomony of a ME outbreak back in 1970s, is probably one of the most accurate descriptions of how my own ME is like

http://c4jrme.110mb.com/supplement223.htm

Im wondering if others here with the leg symptom.. also find this article very much like their own ME?
................

the left sidedness thing mentioned on this thread is weird too. We once had a discussion about it on another ME/CFS site as well a few years ago.. where most seemed to have their most symptoms on that side. Its a interesting coincidence, if it is a coincidence? (maybe its to do with a part of the brain being damaged????)

 

[Athene]

Just adding my own story like others, that I have had this too. I had both legs giving out suddenly, and collapsed to the floor a few times. It was very frightening. They seemed to be completely asleep adn I could not move them for several minutes, then they returned to normal, but felt weak.
It went on for a period of about two months and then stopped, and it has not happened since.

I am so sorry to hear that your ankle got broken and I hope it will heal fast.
I wonder if it could be worth getting a bone density test? I just wonder if your bone is a bit brittle or weak?

 

[Jemal]

I had some bone tests done about a year ago and nothing was wrong then.

 

[Apollonia]

I've just joined PR and found this thread, with the familiar mix of joy and regret at finding someone else with a symptom I have, especially when a broken ankle was the result. I hope you are well on the way to recovery now.

I've had CFS/ME/whatever for 20 years and my left leg has always been the weaker, it would always start to drag as I tired; but about two years ago it got worse, and later my left hand joined in for good measure. I too have had a couple of incidents when my left leg simply gave way: it felt as though the femur had failed to connect at the knee. I walk with a slight limp even on "good" days, usually experiencing shooting pains up from my foot and in my knee at each step, like the Little Mermaid. Standing up can be a challenge, and I often need a helping hand until my legs "learn" to take my weight again; again, the left leg is always the weaker. My left hand is permanently weaker now too, moves more slowly and with less precision, making writing and needlework more challenging, and on a few occasions has refused to move at all.

And the main problem, the thing I'd really like feedback on, has been that my left foot too often fails to obey instructions, especially when I'm making a turn, which of course makes things worse, as vectors are involved. I've had several falls, none of them serious, fortunately, though I did have a pretty bad tumble when doing a treadmill test recently for a cardiologistor rather not doing it, as my left foot did not move when the treadmill did, down I went, and that was the end of that.

I have dysautonomia, with depressed sympathetic and especially parasympathetic systems, and in the past have had abnormal EEGs and an abnormal QEEG, showing most brain activity in the delta region. But a recent LP, two MRIs, an electrical potentials test, and various other tests, were all normal, with no sign of inflammation, myelin loss, or anything relevant, and the neurologist I'm seeing, an ataxia specialist, is baffled; I'm now awaiting the results of a PET scan and a meeting with a movement problems specialist. Another odd thing is that my toes have started to turn in (to the right) and downwards on my left foot; it's not a problem yet, but I'm thinking of getting one of those gizmos that hold your toes straight.

I'd begun to think that these symptoms are unconnected with my CFS; now I'm not so sure!

 

[Jemal]

I've just joined PR and found this thread, with the familiar mix of joy and regret at finding someone else with a symptom I have, especially when a broken ankle was the result. I hope you are well on the way to recovery now.

I've had CFS/ME/whatever for 20 years and my left leg has always been the weaker, it would always start to drag as I tired; but about two years ago it got worse, and later my left hand joined in for good measure. I too have had a couple of incidents when my left leg simply gave way: it felt as though the femur had failed to connect at the knee. I walk with a slight limp even on "good" days, usually experiencing shooting pains up from my foot and in my knee at each step, like the Little Mermaid. Standing up can be a challenge, and I often need a helping hand until my legs "learn" to take my weight again; again, the left leg is always the weaker. My left hand is permanently weaker now too, moves more slowly and with less precision, making writing and needlework more challenging, and on a few occasions has refused to move at all.

And the main problem, the thing I'd really like feedback on, has been that my left foot too often fails to obey instructions, especially when I'm making a turn, which of course makes things worse, as vectors are involved. I've had several falls, none of them serious, fortunately, though I did have a pretty bad tumble when doing a treadmill test recently for a cardiologistor rather not doing it, as my left foot did not move when the treadmill did, down I went, and that was the end of that.

I have dysautonomia, with depressed sympathetic and especially parasympathetic systems, and in the past have had abnormal EEGs and an abnormal QEEG, showing most brain activity in the delta region. But a recent LP, two MRIs, an electrical potentials test, and various other tests, were all normal, with no sign of inflammation, myelin loss, or anything relevant, and the neurologist I'm seeing, an ataxia specialist, is baffled; I'm now awaiting the results of a PET scan and a meeting with a movement problems specialist. Another odd thing is that my toes have started to turn in (to the right) and downwards on my left foot; it's not a problem yet, but I'm thinking of getting one of those gizmos that hold your toes straight.

I'd begun to think that these symptoms are unconnected with my CFS; now I'm not so sure!

Welcome to the forum Apollonia. I do think your symptoms could belong to ME/CFS. Since starting this thread, I have read stories from patients that have more MS-like symptoms, but they don't have MS (at least according to the doctors they saw). They had limbs they couldn't move or some loss of functionality.

Do these particular symptoms ever improve for you?

 

[Apollonia]

Jemal - Yes, they do; sometimes almost completely, adn they can vary a good deal even during a single day. On the other hand (so to say) my left hand is now permanently weaker than it was (I'm left-handed for writing, and use left and right hands indifferently for a number of tasks, so it was quite strong to begin with) and my left foot and lower leg up to the knee always feel "wrong", not only because of a sensation of lingering weakness and discomfort even on good days, but also because I have the illusion that my left leg is shorter than my right, which is so odd a sensation it took me quite a while to pin it down. I have also developed occasional 'flamingo syndrome', the irresistible urge to stand on one leg (my right)obviously while leaning on something or someone, otherwise it would be more like 'deceased flamingo syndrome'.

I do wonder whether people who have these symptoms tend, statistically, to have them more on the left side. It'd be nice to have some epidemiology on it. But there again, it'd be nice to have some proper epidemiology on ME/CFS as a whole.

My sister has a mild 'atypical' form of MS, and she has comparable variation in her symptoms, some of which (extreme unexplained fatigue, sleep difficulties, balance problems) overlap with mine. Our uncle had a very severe form of MS and was in a wheelchair for several decades. MS is not supposed to have a genetic component, but I worry nonetheless.

Apologies for the delay in replying and thank you for your interest.

 

[taniaaust1]

Welcome Apollonia

I did have a pretty bad tumble when doing a treadmill test recently for a cardiologistor rather not doing it, as my left foot did not move when the treadmill did, down I went, and that was the end of that.

That happened to me to when getting a treadmill test done. I ended up cause I couldnt make my legs start walking fast enough when it first started, I ended up on the floor (almost spraining my wrist in the fall).

and in the past have had abnormal EEGs and an abnormal QEEG,

same here thou the finding I get coming up in mine (Ive had a couple of abnormal ones a year apart) isnt the same as the abnormal finding in yours.

Another odd thing is that my toes have started to turn in (to the right) and downwards on my left foot;

I think I had that too happening at one time ..but it isnt nowdays doing that. It wasnt just my toes being different but also my fingers (my hands were going like all curving in with my fingers going into abnormal posture).

 

[WillowJ]

Jemal, sorry about your broken ankle.

Apollonia, welcome to the forum.

I also have my legs give out. feels like it comes from the knee region. I haven't fallen all the way down from it, though. happens with hands, too, and I have dropped dishes.

Also, when tired, my left leg wants to drag. Or feet drop (toes don't pick up correctly).

I get numbness, but I have had negative MRIs and negative EP. My symptoms change too quickly to be MS, I think. I believe it's channelopathy (consistent with ME/CFS or MG) rather than demyelenation.

Demyelenation and re-myelenation takes longer, so some of the MS symptoms change more slowly (not sure how long exactly, but at least several days, if not weeks), while others are from channelopathy and can change rapidly.

 

[taniaaust1]

Just adding my own story like others, that I have had this too. I had both legs giving out suddenly, and collapsed to the floor a few times. It was very frightening. They seemed to be completely asleep adn I could not move them for several minutes, then they returned to normal, but felt weak.
It went on for a period of about two months and then stopped, and it has not happened since.

Athene.. when the site was down (so unfortunately I've now lost the link, I would of put it here otherwise), I came across something which may actually be to do with our issue of both legs suddenly giving way and your experience sounds just like what i read one with following disorder say about not being able to move them for a few minutes after it.

Possible Cataplexy. Could the rare disorder of Cataplexy be far more common in us? http://en.wikipedia.org/wiki/Cataplexy

"Cataplexy is a sudden and transient episode of loss of muscle tone, often triggered by emotions. It is a rare disease[1] (prevalence of fewer than 5 per 10,000 in the community), but frequently affects people who have narcolepsy, a disorder whose principal signs are EDS (Excessive Daytime Sleepiness), sleep attacks, sleep paralysis, hypnagogic hallucinations[2] and disturbed night-time sleep.

The term cataplexy originates from the Greek ???? (kata, meaning "downwards"), and ?????? (pl?xis, meaning "striking" or "hitting" [from plessein meaning "to strike or hit"])."

that makes sense.. we end up hitting the floor one could say.

"Cataplexy manifests itself as muscular weakness which may range from a barely perceptible slackening of the facial muscles to the dropping of the jaw or head, weakness at the knees, or a total collapse. "

"Cataplexy may be partial or complete, affecting a range of muscle groups, from those controlling facial features to (less commonly) those controlling the entire body.[4]

Arm weakness
Sagging jaw
Drooping head
Slumping of the shoulders
Slurred speech
Generalized weakness
Knee buckling

When cataplexy happens often, or cataplexy attacks make patients fall or drop things, it can have serious effects on normal activities. It can cause accidents and be embarrassing when it happens at work or with friends. For example, people with cataplexy may not pick up babies because they are afraid they may drop them.[5]"

http://en.wikipedia.org/wiki/Cataplexy
..........

I found coming across that info interesting as when my legs gave out completely both of them.. I was excessively sleeply that day. With the cataplexy it can apparently be like micro naps.. when one falls asleep for less then a second which happens. These micro naps can be happen and be over so fast that one may not realise that one fell asleep.

When my ME was worst, I did have an issue with my hands just suddenly giving out on me. I couldnt trust that my arms wouldnt just suddenly give and let go. When my sisters baby was born.. I was scared to hold it due to this.

So maybe we are getting some cataplexy???

 

[WillowJ]

we are thought to have narcolepsy:

Spitzer AR, Broadman M. "Treatment of the narcoleptiform sleep disorder in chronic fatigue syndrome and fibromyalgia with sodium oxybate." Pain Pract. 2010 Jan-Feb;10(1):54-9. PMID: 20629967

We retrospectively reviewed 118 cases clinically consistent with CFS or FM, treated in a neurology practice. Abnormal findings on sleep studies and associated human leukocyte antigen markers, and a clinical pattern suggestive of narcolepsy, are present in a high proportion of patients. When considered appropriate based on the clinical picture and test results, treatment with sodium oxybate was offered to these patients. Sixty percent of patients treated with oxybate experienced significant relief of pain, while 75% experienced significant relief of fatigue. We postulate that the response to oxybate in CFS and FM suggests a disturbance of sleep similar to narcolepsy. These findings support this novel approach to intervention and further research.

not much chance of most of us getting sodium oxybate, however, as it has a bad use and there are too many of us for FDA to feel safe approving it for such a large group as ME/CFS and FM (it's already approved for narcolepsy, a much smaller patient group)... for those of us that fall down, though, or drop things a lot, it might be an option

 

[taniaaust1]

Thanks Willow.

This is all certainly an illness which we never stop learning about.

 

[Grampus]

On my Really Bad Days I also have left-sided problems. My leg will give out or my foot will drag. I thought it was just a Me thing I also try to pay particular care to things I am holding on to, like a glass or plate of food. There have been so many times I just "blink out" (for lack of better term) and the item I was holding will suddenly go crashing to the floor. I have been tested for narcolepsy, but they didn't find anything.