Leg weakness/knees buckling

[CB1122]

Hey All - I am having some serious issues with my legs and don't know whats going on. I don't have a diagnosis but am working with a few doctors.

I am wondering what are neurological reasons for leg weakness/knee buckling. It doesn't happen everyday and when I do get it its not always along with my other (disequilibrium/vertigo) symptoms. Sometimes it lasts a minute, sometimes a few hours, and sometimes 2-3 days!

Today is a bad bad day. I can barely walk and am taking care of my 13 month old all by myself. Luckily my head/cognition isn't bad so I can at least think clearly.

So basically if I try to walk my knees just give out repeatedly. My legs feel tingly. I can stand if holding onto something or leaning, but not for long.

I just don't know what to do.... who to ask... what questions to ask... and of course when I'm at the Dr. my legs are fine so they don't really understand when I tell them I can't walk!

Any help!?!?!

[RicoDCG]

Hi, my name's Rico. I was in the USAF for 20 years (1981 - 2001); however, I was diagnosed with MS close to the start of my 19th year in the Air Force.  Anyway, 4-months after being diagnosed, I was walking around the neighborhood with my wife and daughter. Then, out of nowhere, both my knees buckled at the same time. In a instant, I went from: a standing position; hitting my rear on the sidewalk; a squatting position for a second, or two; then wobbling my arms frantically in a sub-conscience attempt to stand back up straight~which I did. Immediately thereafter, I looked at my wife and daughter and we all began laughing so hard because of how fast everything occurred and what I looked like in my attempt to stand back up. Thinking the episode was nothing more than some kind of weird fluke (my knees never buckled before this in any shape, form or fashion) and after the three of us stopped laughing, we began to resume our walk; problem was though, it happened again. The first two, or so times this happened we all laughed so hard, it's amazing none of us wet ourselves. However, after this continued, my family's smiles quickly disappeared and everyone began to worry. My daughter actually became very anxious and started crying asking me in a very alarming voice, "What's wrong Pop!?!!" In a calm voice I told her not to worry, but to run back and get our neighbor to come pick me up. After notifying my neurologist and walking around like a duck for nearly a week (I thought I was on my way to being bedridden), my neurologist came across this (or very similar condition) in one of her MS books. She titled my knee buckling problem as a "paroxysmal positive motor disturbance". Her cure was to put me on Dilantin~an anti-seizure medicine. If my memory serves me correctly, I was walking normal again the same day; however, my knees continually buckled regardless of whether, or not I was just standing, or walking. But get this--my knees DO NOT buckle when I run. In regards to the Dilantin; well, once again, relying just on my memory I believe I was on it for three, or four months. Since then (the end of 2000) to present, my knees continue to buckle (whenever they feel like it...lol) I'm standing and walking; but again, THIS DOES NOT happen when I run. Further, I've never been put back on Dilantin (or any other medicine for that matter) for this condition. FYI~I came to this site to see if I could find anyone else in the MS community that had the same symptoms I have (my knees buckle spontaneously when I'm walking and standing, but NOT when I'm running) when I came across your question. So I hope you find my response helpful/informational and if there's anyone out there that can tell me if they are experiencing they same symptoms I am, I'd be glad to hear from you. Ciao for now and Best Wishes to All; Regards....Rico

[selmaS]

Hi and welcome to the Chiari forum.
Chiari symptoms are very similar to MS but one difference if we run we get the worst headache ever, it is not on our ok to do list. Glad it is a possible thing for you to do though. And I hope you find others in the MS forum that share your experience.

[RicoDCG]

Thanks for your comment. I truly enjoy getting responses such as yours as it (your response) and others continue to further educate me. Good luck to you and all your future endeavors.

[selmaS]

Thank  you too.....it is nice to see that others with similar symptoms can find relief. I was wondering if you also posted in the MS forum?

[selmaS]

  HI and welcome to the Chiari forum.

Florescent lights affect me as well...not so much with buckling but nausea, hot flashes and the sensation I am walking in a dream like atmosphere....it is just off and does not feel right....not sure how to correctly describe it...but it makes me feel sick, so much so I hate shopping in stores since they use florescent lights....

Do you know if you also have Chiari?

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask, do you also have Chiari?

Low levels of vitamins and minerals are always an important place to start with any health condition and especially for those with Chiari as we also tend to have Ehlers-Danlos Syndrome which can cause mal absorption of vitamins and minerals from our food source as well as supplemental....

Chiari in itself can cause many of the symptoms mentioned in your post.

Have you foound out the ource of your migraines?

[julsie92]

I have knee buckling as an extremely rare migraine symptom. None of my (many) doctors have ever heard of such a thing, but it is definitely related to my light/noise sensitivity and my mom and sister have it as a migraine symptom as well. Your brain fog and dizziness suggest it could be something similar. Anyone else here have knee buckling with migraines?
I have also recently started to wonder about a vitamin d deficiency affecting it, as a friend said her knees buckled when she had a vitamin d deficiency and my levels are extremely low. Can't tell yet if supplements are helping, but you could give it a shot.

[jkron]

I have had issues with my knees buckling at seeming random times for several years.  I have been diagnosed with Superior Semicircular Canal Dehiscence and figured that the buckling may be associated with that syndrome (and it may be but the doctors didn't think so) but I recently noticed that I am more prone to buckle in areas in which fluorescent light is predominant.  It is in these areas that migraine auras are likely to be triggered.  Today I experienced both greatly increased knee buckling and a migraine aura (I get the auras without headaches usually).

[selmaS]

  Hi and welcome to the Chiari forum.

Was ur DD DX'd with Chiari?....does she have ne related conditions as well?

Chiari can cause these issues CB mentioned,.....and u need to locate a true Chiari specialist to help as most Drs , NL's and even some NS's are not well informed or experienced with Chiari.

Did ur DD have a brain MRI, and cervical spine MRI?

[gisdata]

Has anyone yet determined what is happening with your legs? My 14 yr old daughter is having these same problems. We've taken her to many specialists, including a neurologist, but nobody seems to know anything. I'm interested in whatever you found out with your situation.

[Jennyfoo]

Ask your neurologist. That's who you need to talk to. If you've got a dr at the Chiari Institute, then you've got a wonderful resource. Call him, make a follow-up appt or something, even if it's just to get clarity of what's going on. You shouldn't be left in the dark. You've got to remember to ask these questions and be your own advocate with doctors.

I have problems with mainly my right leg. I have numbness and tingling on my foot and ankle, and up my calf on bad days. I also have had issues with that leg buckling/giving out on me and spasticity in my muscles. My calf almost always feels like it's going to cramp up/ Charley horse. It's difficult to walk sonetimes and I use a cane, but I've got pretty bad dizziness and vertigo too.

[CB1122]

I agree.... I know I don't have a syrinx and don't think I have Disk degeneration... I would think that the Dr. would have said something yesterday :/

Thanks for your answers...

I think the x-ray of my low back/hip/pelvic area looks wrong... any ideas if that could be a problem? Not really sure what I am looking for - or who to ask

[rod44]

this all sounds like nerve problems.
Do you know if you have a Syrinx or Disk degeneration or any other spinal problems?

[CB1122]

There is no report with it. I got the MRI done at The Chiari Institute yesterday and brought all the images to the Neurologist I met with. He didn't mention anything when looking through all the MRIs....

It is both legs. Today I had shooting pains in my right knee and down my shins... sometimes in my hips. It is not constant just shoots randomly. I haven't had any pins/needles today or numbness, but I have experienced those feelings in my feet and toes. Side note: My left foot almost always goes numb/falls asleep when I drive for an hour or longer.

[rod44]

Is it both legs, is there pain or is it just weakness?
Do you have pins & needles and/or numbness?

Ray

[taylapj]

What does your MRI report say? ;-)

[CB1122]

Hi - thanks for responding. I actually did just get an MRI of my spine done yesterday. I have such a difficult time trying to read these things... do you know what I would look for?

I walk with a cane on bad days - it is sooo frustrating :/

Thank you!!

[taylapj]

Hi, so sorry your going through this, I'm currently on / off crotches where my legs buckle so much, have you had a spine MRI done? I only ask cause I have scoliosis, stenosis, nerve and spinal cord impingement which is causing the biomechanics of my lower back to not be very good hence leg weakness and stability. I completely understand it's SO hard never knowing from one day to the next if your gonna be able to walk ok. X