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

track dude wrote:

I posted a few months ago that my cervical and brain MRIs appeared normal. However, last week I received updated comments from the neurologist.

It was noted on my brain MRI that I had more metal in parts of my brain than what was typical for someone my age. I completely dismissed this because the neurologist told me at my last appointment that it was probably unrelated to any of my issues. This past week I see notes in my records that the head neurologist wants me to come back for genetic testing.

It turns out the excess metal in the brain could be a case of a rare condition called "Neurodegeneration with brain iron accumulation" NBIA. Normally NBIA starts in early childhood, between 10 and 18 or in adults with slow progression. My condition is relatively stable, however they noted that there have been some sporadic similar to mine (first appearing in adulthood and relatively stable). So I will go in for genetic testing and hopefully get more answers.

I was absolutely stunned when I looked up NBIA (

https://www.nbiadisorders.org/about-nbia/overview-of-nbia-disorders

) and discovered that dystonia and is a leading symptom.

I've read a ton on the subject of dystonia, but this is the first I have ever heard of NBIA.

I'm just throwing this out there as one more avenue for people to explore.

mlbfan24 wrote:

track dude wrote:

I posted a few months ago that my cervical and brain MRIs appeared normal. However, last week I received updated comments from the neurologist.

It was noted on my brain MRI that I had more metal in parts of my brain than what was typical for someone my age. I completely dismissed this because the neurologist told me at my last appointment that it was probably unrelated to any of my issues. This past week I see notes in my records that the head neurologist wants me to come back for genetic testing.

It turns out the excess metal in the brain could be a case of a rare condition called "Neurodegeneration with brain iron accumulation" NBIA. Normally NBIA starts in early childhood, between 10 and 18 or in adults with slow progression. My condition is relatively stable, however they noted that there have been some sporadic similar to mine (first appearing in adulthood and relatively stable). So I will go in for genetic testing and hopefully get more answers.

I was absolutely stunned when I looked up NBIA (

https://www.nbiadisorders.org/about-nbia/overview-of-nbia-disorders

) and discovered that dystonia and is a leading symptom.

I've read a ton on the subject of dystonia, but this is the first I have ever heard of NBIA.

I'm just throwing this out there as one more avenue for people to explore.

That is interesting. Did you get the genetic testing done yet? I’m actually going in for a brain MRI tomorrow. I basically stopped running for years and didn’t pursue any sort of diagnosis until my condition progressed to a foot drop a almost 2 years ago that’s present at all times while walking and running now. So far my neurologist has ruled out Parkinson’s and some other insidious neuro disorders. DaT scan, EMG, nerve conduction and a lumbar MRI have all come back normal. He’s pretty well convinced I have some form of dystonia but we’ll see after the MRI comes back.

pretty well fixed wrote:

I actually just responded to a recentTwitter post by Kara Goucher. I really hope she doesn’t think I’m some strange loon, as I have basically zero Twitter activity apart from the messages I just left on her Twitter. In any event, let’s hope she comes across this thread. Like I said previously, I may break this down into a concise YouTube video.
I think we all have all had the same symptoms (a sense of weakness in the leg, a tightening of the hamstring and sciatic nerve in the affected leg, a feeling of the foot turning medially in a sort of spasming-way, toes randomly dorsiflexing, etc).
I’ll post this video again, and I want to reiterate: I am in no way whatsoever associated with POSE. I simply know that I use this video as a reference and it has helped remove this problem almost entirely.

Video:youtu.be/_DTd7t8nzEg

Stop reaching wrote:

pretty well fixed wrote:

I actually just responded to a recentTwitter post by Kara Goucher. I really hope she doesn’t think I’m some strange loon, as I have basically zero Twitter activity apart from the messages I just left on her Twitter. In any event, let’s hope she comes across this thread. Like I said previously, I may break this down into a concise YouTube video.
I think we all have all had the same symptoms (a sense of weakness in the leg, a tightening of the hamstring and sciatic nerve in the affected leg, a feeling of the foot turning medially in a sort of spasming-way, toes randomly dorsiflexing, etc).
I’ll post this video again, and I want to reiterate: I am in no way whatsoever associated with POSE. I simply know that I use this video as a reference and it has helped remove this problem almost entirely.

Video:youtu.be/_DTd7t8nzEg

I don’t what people object to with POSE, but what the POSE instructors describe is also the way that every elite runner runs- and it’s helped me a lot, as an older runner who was overstriding- although it has taken several years to make the change.

track dude wrote:

mlbfan24 wrote:

That is interesting. Did you get the genetic testing done yet? I’m actually going in for a brain MRI tomorrow. I basically stopped running for years and didn’t pursue any sort of diagnosis until my condition progressed to a foot drop a almost 2 years ago that’s present at all times while walking and running now. So far my neurologist has ruled out Parkinson’s and some other insidious neuro disorders. DaT scan, EMG, nerve conduction and a lumbar MRI have all come back normal. He’s pretty well convinced I have some form of dystonia but we’ll see after the MRI comes back.

I just sent a reminder to the lead neurologist, hopefully I can get the genetic testing done soon. Things move pretty slowly in that office.

Sorry to hear about your struggles! I recall that you actually experienced something in both legs, is that still the case? Is one leg worse than the other?

pretty well fixed wrote:

Stop reaching wrote:

I don’t what people object to with POSE, but what the POSE instructors describe is also the way that every elite runner runs- and it’s helped me a lot, as an older runner who was overstriding- although it has taken several years to make the change.

I think, for me anyway, pridefully (years ago) the whole probably just seemed gimmicky or perhaps “too basic”; which, of course, was nonsensical, as my running form was absolutely terrible.

But, I absolutely agree w/ what you say. It’s completely changed my approach to running and just movement in general.

The irony of this is that the weakness in the leg (and the accompanying muscle tension, nerve tightening, etc.), appear to be resolved by learning how to run without muscular effort in the legs.

I’m not sure if the mechanics of runner’s dystonia are thoroughly understood, and perhaps there are some individual differences needing to be accounted for. However, as a non-medical-professional opinion: there seems to be a direct causal relationship between this phenomenon and excessive muscular exertion in the lower extremities. How exactly that affects the nerves or whatever, I don’t know. But, as I’ve encountered again and again since learning to fix my stride: run without your body weight; do NOT drive your legs forward.

Praise God: this is indeed a condition that can be managed.