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20866773 tn?1551913127

My knees buckle w/o warning when standing/walking; but not running. Anyone else?

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. 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). I hope you find my response helpful/informational/interesting and I'd be glad to hear/talk with anyone out there about the same topic. I'd really like to her from anyone out there that can tell me if they are experiencing they same symptoms I am. Ciao for now and Best Wishes to All; Regards....Rico 
1 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hi there,

The first time i read your post it rung a bell but for the life of me i couldn't recall what neurological condition 'can't run forward but can run backwards' has a connection too....

When i did remember, part of the problem i had following the memory bread crumbs was that it's not actually a situation that is specific to MS but a very rare off shoot of a neurological condition that has an association with MS, so what did those memory bread crumbs lead me to, Dystonia but more specifically the very rare off shoot called Runner's Dystonia.

Basically in relation to MS, Dystonia would generally be classed as Secondary Dystonia, acquired symptoms associated with the physiological processes with the primary cause being MS. From my understanding Dystonia is associated with damage to the basal ganglia, though i also know that reduced Dopamine levels, older antipsychotic drugs, toxin exposure etc has also been associated with both primary and secondary dystonia too.

Task specific focal situations arise with Dystonia, interestingly this type of Dystonia is more commonly associated with the more specific skill sets of writers, musician, engineers etc to me it makes sense why it could also happen to runners, walkers, dancers etc too though it's suppose to be as rare as hens teeth....if you have a primary nervous system disorder like MS, cerebral palsy etc then there is definitely the potentially for task specific focal dystonia to happen too.

In it's way this type of Dystonia has more to do with the signals from brain to the certain muscle groups getting mixed up, repetition of the specific task that was once automatic, instinctive with little to no thought to produce the desired outcome, instead the nervous system malfunctions causing the outcome when performing the specific intentional activity to be a combination of some muscles with focal dystonia to tire very quickly, whilst some other parts of the muscle group to not respond and cause weakness and others still overly responding or becoming rigid....

There is some thought that brain plasticity, in the negative plays it's part too, and for what ever reason the act of beginning task 'x' can become a trigger for the movement disorder to show its self. Physio therapy that is focused on altering task specific focal dystonia outcomes and getting results, seems to be incorporating brain plasticity and muscle memory theories so there really could be something to it.

With runners dystonia they have found that some athletes can run backwards but no longer forwards, to run backwards involves a different signal order and or muscle group activity so the movement disorder isn't triggered or the repetition of movement travelling backwards isn't recreating the combined muscle reactions that forward does. This article below mentions research, support groups, a specialist or two etc for people experiencing Runners Dystonia so it might be worth checking it out to see IF this could be what is going on with you.

https://www.runnersworld.com/health-injuries/a20865203/runners-dystonia-mysterious-malady-causes-mind-and-muscle-to-lose-touch/

Hope this helps......JJ          
1 Comments
Hey JJ, I truly appreciate your detailed response to my knee buckling issue. I promise to follow-up with you as to whether, or not, dystonia is in any associated with what's going on with me. Thanks again for your time and response; both of which I'm grateful for. Ciao for now; I'll be sure to stay in touch...Rico
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