Loss of coordination in leg - Official runner's dystonia / focal dystonia discussion thread

I had loss of coordination of my leg in 2007, with it starting prior to racing the Marine Corp Marathon. I managed to run a 3:05 with the last 3 miles being very difficult due to the lack of coordination. At that time I thought it was a groin issue and got the scan to diagnose a labral tear, which it was not. I eventually got new orthotics and did a little PT (didn't take it too seriously) and it seemed to get better. However, in February of 2012 I started losing control of my foot (same leg) and it feels to be much the same problem although the lack of coordination is coming from a different place (foot as opposed to hip). It has been much more frustrating. After a year and a half I am working with a PT after having seen 6 other specialists. For me, my foot tightens up (both walking and running) and it supinates pretty bad when I run. My wear pattern has completely changed on my shoes. The problem foot doesn't seem to be striking as hard because that shoe is hardly worn compared to the good foot. It also looks like I am not pushing off with my toe the same way, which makes sense because I don't have the coordination to do so. This doesn't prevent me from running, but I definitely can't race this way. I also took 10 months off when I was pregnant (very sick) and that didn't change anything. Going to try getting a massage this weekend. I occasionally get a few steps that feel okay. It's hard to remember what it felt like to run without this issue. I'll post back with updates as I continue to struggle with this.

I had loss of coordination of my leg in 2007, with it starting prior to racing the Marine Corp Marathon. I managed to run a 3:05 with the last 3 miles being very difficult due to the lack of coordination. At that time I thought it was a groin issue and got the scan to diagnose a labral tear, which it was not. I eventually got new orthotics and did a little PT (didn't take it too seriously) and it seemed to get better. However, in February of 2012 I started losing control of my foot (same leg) and it feels to be much the same problem although the lack of coordination is coming from a different place (foot as opposed to hip). It has been much more frustrating. After a year and a half I am working with a PT after having seen 6 other specialists. For me, my foot tightens up (both walking and running) and it supinates pretty bad when I run. My wear pattern has completely changed on my shoes. The problem foot doesn't seem to be striking as hard because that shoe is hardly worn compared to the good foot. It also looks like I am not pushing off with my toe the same way, which makes sense because I don't have the coordination to do so. This doesn't prevent me from running, but I definitely can't race this way. I also took 10 months off when I was pregnant (very sick) and that didn't change anything. Going to try getting a massage this weekend. I occasionally get a few steps that feel okay. It's hard to remember what it felt like to run without this issue. I'll post back with updates as I continue to struggle with this.

Okay, so I have been to the doctor 2 more times. This doctor was the one who checked on the labral tear right away (was not), so I want to think he is competent. The first appointment he said my pelvis was anteriorly rotated and my tibia was externally rotated. He did some adjustments and had me test it. My foot plant was better but turned way out to the side. He also said I needed to work on neuromuscular training, so I continue with PT. After the adjustment to my back the loss of coordination was MUCH WORSE! In fact it showed up on the other side with occasional shooting pain. Went back to him complaining of things having gotten worse - foot turned way out and the loss of control on the other side as well. He didn't know what to think and said to continue with PT for another month. Then he would "put his thinking cap on." Really! I've been in PT for months and dealing with his injury for 2 years. I did have the loss of coordination on my left side go away for 3+ years. Not sure why it is back on that side, but I am attributing it in part to the back manipulation. Also, I am on board with the externally rotated and internally rotated femur, just don't know how to fix it since PT isn't helping. I have read about the surgery where the tibia gets broken and reset. Has anyone had experience with that? Not sure if anyone might know of a referral option for a doctor who has dealt with this issue. I am in Virginia.

This problem ended my running career back in 1984 at age 24. No one could diagnose. No, pain, just loss of control especially when fatiqued. I had 3 exploratory surgeries, many visits to the chiropractor,taping, etc. with no positive (and some additional negative) results.

It started at the end of a hard repeat mile session on the track in February of that year and got progressively worse where it would hit in the last mile or so of a 5K or 10K on the track. Same issue on the roads. Trails did not help. I was extremely frustrated as I was (for me) very fit, qualified for the Trials that year on one leg - it let go at 20 laps, but I was well ahead of the OT qualifying time. Basically watched guys that were dying pass me in the last 5 laps as I dropped from the lead group to 10th and lost 25 seconds on them. I felt great, except I couldn't control my damn leg.

By the time the Trials rolled around in June it was worse. I had the same experinence in both the 5K and 10K prelims and did not make either final. The Trials were my last races ever.

After all this time, I do believe it is related to my slight scoliosis combined with many years of hard running altering the nerve signals to my left leg. I've never been able to fix it.

I would hope that today's technology would come up with a non-invasive way to address this. Interesting as I thought I was the only one who ever had this problem.

Katie, I have been on this thread for years, it seems. Are you saying you foot rotates out (tibial torsion) and your femur rotates in (femoral anteversion). If so that is also me. I have been running 40 years with this and finally needed an operation for a labral tear in that hip 2 years ago. I could run awkwardly (50 marathons)through the years until I got the surgery. I thought that would fix things, but the compensations through the years added up. I have been to all sorts of therapists and doctors, learned a little bit here and there. but no one could ultimately fix things up and each one thought it was something different. I am hoping to get back to running after I can run without any problems during and post run. I am getting close to that I think, but it is taking a long time to unlearn habits and muscle and joint positions I got used to. I could run some decent miles post surgery, but not without pain or limping. I want to be pain-free. My lifeline was getting an ElliptiGO early in the summer. For the first time in 3 years, I could exercise all I wanted without any complications. It has also been better than any therapist or doctor in helping me recover my stride. I don't think you really want that tibia operation! Doctors would only mention it to me in jest. I wish I knew exactly what might work for you, but I have not found the answer. I think over time the muscles and ligaments around the joints change due to the form issues that you have and it takes a lot of time to change them back. I was dealing with daily pain since the mid 1980s(mostly back) after all my running. I feel much better now in general, but I do not tolerate the pain I used to have on a daily basis.

TDF- I have been following this forum for more than a year, with pretty much the same symptoms and thousands of dollars and hours spent trying to figure this out. Insidious, painless onset of right leg and foot dragging when I run. I ran ultra races for a decade and now can't run 5 minutes or less without symptoms. Looks like I have had a stroke when I run. I am sad to hear that your labral tear surgery didn't solve this problem! The last I checked this forum, I was thinking you and maybe frustrated runner were the few people that had figured this out. I am wondering if you ever had an epidural in your spine, or if there was a specific area in your back that had disc damage? One hip surgeon feels I do have a labral tear(MRA wasn't super conclusive) but doesn't think the tear would cause this drag - he thinks it is in my back. Lumbar MRI showed a small bulge at L4-5, but no nerve impingement and no significant pain. About three months ago, when I was trying to run despite a crazy leg drag, I started to get groin pain, burning and some deep ache in hip. In a weird way it was almost a relief to have some pain, since several doctors and PTs have suggested I have runners dystonia - which stinks too. So along with my first question about your back - did you start to develop pain for this condition before you had the labral tear surgery? It might be in the pages of earlier posts somewhere, but I thought it easier to ask.

Thanks for the additional posts that follow mine. I like others, have benefited greatly from the posts of others. I don't know how I came about them, but "The Gait Guys" offer a lot of great information through YouTube videos and their website regarding these issues. The have put the pieces together for me. Here is just a sample of how they explain the problem of insufficient internal hip rotation..."And so if you follow this whole lineage, you will see a completion of a vicious cycle. So now, the entire gait pattern is disrupted. From internal hip rotation, to hip extension, to glute mediation, to pelvic instability, to impaired limb spin, to impaired pronation-supination cycle and thus …… gait pathology. And in time, but hopefully not, hip labral and knee meniscal pathologies to go with the gait pathology (GAIT GUYS)." For me, I think this is definitely the case with all those aspects of gait pathology experienced. I haven't been thinking hip issues, but after it was brought to my attention I notice that my right hip (the side with all the problems) is tight and the range of motion is different (especially notice if I get on all fours, bend my knee and push my foot to the ceiling). How to fix it seems more complicated being that I must now find someone with the same understanding in my area. UVA has a gait lab so I am scheduled for an analysis with a follow-up with a PT they work with. I am about 2 hours from there so will need a referral and am just hoping there is someone competent here. From what I read PTs can do neuromuscular training and manual therapy; however, the 2 that I have seen have not done that...only focused on core strength which hasn't fixed the problem at all. Here is the link for FAQ regarding the Speed Clinic (http://www.medicine.virginia.edu/clinical/departments/physical-medicine-rehabilitation/the-speed-clinic/faqs.html), which I encourage others to check out as I am optimistic that they will get me on the right path to recovery. I will post a follow-up regarding their findings and recommendations. Also, "The Gait Guys" have DVDs however I emailed them about which one to start with and they haven't gotten back to me.

it's crazy!

just now find this looooooong post (6 year! wow!) and i was thinking i'm the only (crazy?!) one in the world that can not really explain to the physician what he feel.

but

i'm glad to tell you that i think i got a very very practical solution (and the CRAZY theory behind it).

i'm about to start a real research with my Chiro about this.

meanwhile,

each one of you guys who want to get some direction for the treatment, can e-mail me to:

adame86@walla.com

all the best

the e-mail is

adame86@walla.co.il

and NOT .com

I've followed this thread for some time, having the same unexplainable issue for nearly 2 years. I had a long hospital stay to determine what the problem was, then a total misdiagnosis resulting in an unneeded liver procedure and then months upon months of thinking I was going crazy. Been a nightmare, really.

My problem has gotten progressively worse, in August and September I was able to run (with my weird altered gait)on grass but now, am unable to do that so I quit running end of October. That said, I've also developed some other neurological symptoms so Multiple Sclerosis is now on the table, will be going for MRIs at the beginning of the year.

As far as uneven footing, mentioned above, a friend videotaped me a couple weeks ago and I was very surprised to see a toe-landing with my better leg, though it made sense since I often feel some foot sticking (foot-drop) with the right leg so it's a compensatory move.

Anyway, I just wanted to throw my deal in here as well since we're all searching for answers. Best wishes to all.

I wanted to follow up on the above message as well as shed some light for those of you who may have struggled with an altered gait and loss of motor control. I just returned from the University of Utah's Movement Disorder Clinic and met with a respected neurologist there. I was diagnosed with runner's dystonia - which has been mentioned a few times in this thread as a possibility for some. For the record, I have had 6 MRIs (entire back, hip, hamstring and brain twice), an MRA of the hip, 3 cortisone shots in hip and back, an ankle brachial index test, and a dynamic ultrasound - all in search of a mechanical problem to explain my symptoms of right foot drop and leg drag while running. I did have a small labral tear in the affected leg, which, after reading this entire thread, I was hoping was the problem. Sadly, this condition is not surgically fixable like a labral tear. Runner's dystonia is a brain malfunction - a task specific dystonia that shows up when I'm running forward - but not when I skip, walk, bike, jump, etc. There is no real test for it, so most likely you will have to go through a certain amount of the above mentioned test to rule out orthopedic issues. But if you can do other things like walk, skip, run backwards or run with your eyes closed, and the symptoms abate or feel better, then I would try to get into a movement disorder clinic - where there is a neurologist who treats dystonia. This is all quite rare, but I finally have my answer after 1.5 years from the start of symptoms. Unfortunately, there isn't any well established cure - and since it starts with the brain, it is pretty tricky.

Just wanted to add myself to this long list of "loss of coordination" sufferers. My problem is in my right leg. It began suddenly the last week of March 2013 at the end of a 20 mile run. During the last mile my right leg started to feel really tired and wobbly. I initially wrote it off as fatigue, but a couple of days later on my next run the leg did the same thing and has been this way ever since. As soon as I start running I lose control of my right leg. It feels like it isn't screwed in correctly causing it to swing outwards forcing my foot to land in a very awkward "toes pointed out" position. This seems to be a weight bearing issue, because I can ride my bike and swim just fine, but walking feels awkward and running is almost impossible. The funny thing is that I can sprint just fine, but the minute I slow down my leg turns into a clown leg. I have full strength in the leg and no pain. I've had numerous medical tests since then; five MRI’s (from the neck down to the pelvis), two EMG's , dozens of blood tests, a spinal tap, a muscle biopsy and a trip to a teaching hospital. The only thing that came back abnormal was my first EMG in June which led them to believe that I must have had some kind of infection that damaged some nerves because they couldn't find anything in my MRI's. My second EMG in October came back normal which baffled them even more because I still have the same trouble with my leg. I notice that the loss of control happens when I put my full weight on my bad leg with my heel first. On my toes I'm just fine. Should my next step be a Sports doctor maybe?

I would try to see an orthopedic who specializes in hip joint pathology. It could be a wide variety of issues, but to me it sounds like 1 of 2 issues:

1. Sacroiliac Joint is out of alignment

or

2. There is a bony abnormality and/or labral pathology which is affecting the arthrokinematics of the ball and socket joint.

I think #2 is most likely the cause. I would be more concerned with bony abnormality at this point. Because you've had a lot of tests and imaging done I would try to do some research in terms of who is the most experienced orthopedic within reasonable driving distance in your area. I would then inquire about a possible CT scan (the most thorough way to assess the bone structure) and if he feels it's necessary, an MR Arthrogram (which may light up issues that were not visible on an MRI).

Whoa! 2014 and the thread still lives on?!! Let's celebrate with some Thomas Edison (or at least quotes attributed to him)...

“I have not failed. I've just found 10,000 ways that won't work.”

“Negative results are just what I want. They’re just as valuable to me as positive results. I can never find the thing that does the job best until I find the ones that don’t.”

“When you have exhausted all possibilities, remember this - you haven't.”

“Our greatest weakness lies in giving up. The most certain way to succeed is to try just one more time.”

“There are no rules here -- we're trying to accomplish something.”

Thanks aisling0984, I'll look at #2. I've always felt that this had to originate from my hip somehow, but the orthopedic doctor here in Estes Park, CO said he couldn't find any issues in my MRI including a labral tear. So maybe a CT scan is in order. Most of the doctors I've seen aren't used to dealing with runners which can make it difficult for them to understand my symptoms correctly. It's been a very frustrating year. I've been running for over twenty years without any injuries up until now.

Wow, this really strikes me. My issues started about 6-8 months of changing my form to be a forefoot striker. Also, about 18 months previous I had tendonitis in both IT bands. My left being worse than my right. Also, I lose coordination in left leg much quicker and more severely in my left leg than right.

FrustratedHips wrote:

Today I used the hip abductor machine for the first time since (re)starting to heel strike while running. My hips/IT bands were incredibly tight, which suggests that my hypothesis (and that of many posting here) may be accurate: forefoot striking for several months/years may lead to loss of strength in IT band and hip flexors. Presumably the road to recovery will take lots of strength exercises and more stretching.

Hi,

I'm a female marathoner. I've run six marathons. I've had what I consider to be normal overuse injuries over the years. I drive a stick shift and have noticed that I get a tight, gnawing pain in my upper left glute (glute medius)when I drive long distances in stop-and-go traffic, particularly during marathon training when my mileage is relatively high. For four of of six marathon training cycles, I struggled with intermittent bouts of weakness in the left leg. I assumed that inflamation of a muscle was pressing on the sciatic nerve. In the fall of 2012 I was out for a normal run (a day after a three hour car trip) and my foot started slamming to the ground without flexing. I had to move into the rough area adjacent to the road to force my foot to flex in order to make it home. I went for a job the next day and felt unable to extend my leg (my hamstring felt yanked). I continued to jog on soft surfaces. My leg started rotating outward so much so that my left foot would clip my right calf and leave a bruise or dirt mark. It has been 14 months. I have chronic pain in my glute medius. I have been to an orthopedist, 3PT's, a pain management clinic and a chiropractor. I can't walk comfortably. My hip clicks and my hamstring snaps or jerks my leg back and outward to the left. I am uncomfortable all of the time. Months of rest has resulted in ZERO improvement. I can't control my leg. It turns outward and the foot supinates so badly that I have a bruise along the outside of my foot. I can't seem to interest an orthopedist, perhaps because I am not a professional runner. An orthopedist suggest I see a chiropractor (which shocked me). I do NOT have groin pain. The orthopedist seemed to be interested only in whether or not I experience groin pain - perhaps he has ruled out a labral tear because of the absence of this pain. I can not run rapidly enough to keep warm in cold weather. I do not breathe heavily because I can not bring my leg forward or keep the leg straight. This is not a problem brought on or aggravated by fatigue. This is a problem I have every step I take, walking or running, every day. I WILL get to the bottom of this.

Another Clown Leg you should really get yourself to a movement disorder clinic or to a neurologist who specializes in movement disorders like dystonia. I have runner's dystonia and your symptoms and history sound just like mine. I can bike, swim and ski without issue - I can even sprint for about 10 seconds - just can't run forward without my right leg dragging and toes curling. Don't waste anymore time and money and see a movement disorder specialist. It took me 1.5 years and a ton of tests to get a diagnosis.

Another Clown Leg you should really get yourself to a movement disorder clinic or to a neurologist who specializes in movement disorders like dystonia. I have runner's dystonia and your symptoms and history sound just like mine. I can bike, swim and ski without issue - I can even sprint for about 10 seconds - just can't run forward without my right leg dragging and toes curling. Don't waste anymore time and money and see a movement disorder specialist. It took me 1.5 years and a ton of tests to get a diagnosis.