Kara Goucher reveals she's been falling at times on runs and Mayo Clinic determines she's battling runner's dystonia

Just really, really sad. I wish her peace. I can’t imagine what she’s going through.

I hope Kara does OK managing this condition. All the best to Kara.

Hi Kara,

I was diagnosed with runner’s focal dystonia after six years. I was 21 at my outset in 1989, squeezed through into the 1992 Trials 3000m and 1993 XC Worlds before it derailed me.

I have a lot experience with clinical treatment, orthopedic fallout and coping strategies, if you are interested.

Take care,

Laura Cattivera

Lcatwhite@gmail.com

I feel really sorry for Kara, hope she learns to live with this.

I've also reported the above post for personal info. i know it was with the best intentions, and maybe the mods can pass info on somehow, but lrc is not somewhere you want personal info in the open, sorry Laura.

Second. Opinion.

"I have to drastically cut back or not only will I lose the ability to run at all, I will struggle to walk as well." Sounds like complete bs.

With the number of doctors who spew out ridiculous nonsense about running, I would never trust one to tell me the quote above. As some guy already said ITT, take a year or two off, and slowly get back into it at a more casual level. Good chance you won't have any issues.

Thanks for posting. I'm sure it will be appreciated. Were you able to identify the underlying cause?

I'd never heard of this condition. I read that it might be caused by repetitive motion, but that's not really a "cause" because millions of people run without getting this condition. I'm not a doctor, but to me, the cause must be something that is exacerbated by repetitive motion, not the motion itself. 

Kind of a weird explanation of her condition given the neurologic findings. MS cannot be ruled out with CSF analysis as 5-10% of those diagnosed with the condition are negative on this study. She says the neurologist "found lesions in her brain". What's that all about??? She doesn't explain what study was used for this but I don't know how it could be discovered without a study like MRI or CT (she says a "brain scan later showed no changes" so I'm assuming some kind of baseline imaging study was used to base this on. She also describes peripheral neuropathy, with the loss of sensation in hands and feet with abnormal EMG findings.

So she has neurological pathology affecting her CNS and PNS. She then got reduction of symptoms with a "parkinsons medication". It sounds like they could indeed be treating her for Parkinson's disease based on the symptoms, test findings, and positive response to a "Parkinson's medication". Neurologic conditions seem to be difficult to pin down the diagnosis sometimes, often taking month or years to be fully appreciated. I see a fair number of people for whom their symptoms don't seem to fit into a neat diagnosis cubbyhole, or their neurologists just cant figure it out.

Another thought. Could she be suffering from a Covid long-hauler condition? There have been reports of strange neurological symptoms that develop after a bout with the virus. Not sure if Cara had Covid though.

I know, I know, it's Kara. My apologies.

LauraCattivera wrote:

Hi Kara,

I was diagnosed with runner’s focal dystonia after six years. I was 21 at my outset in 1989, squeezed through into the 1992 Trials 3000m and 1993 XC Worlds before it derailed me.

I have a lot experience with clinical treatment, orthopedic fallout and coping strategies, if you are interested.

Take care,

Laura Cattivera

Lcatwhite@gmail.com

You were the first person I thought of when I heard about Kara.

AltrusticRaven wrote:

Second. Opinion.

"I have to drastically cut back or not only will I lose the ability to run at all, I will struggle to walk as well." Sounds like complete bs.

With the number of doctors who spew out ridiculous nonsense about running, I would never trust one to tell me the quote above. As some guy already said ITT, take a year or two off, and slowly get back into it at a more casual level. Good chance you won't have any issues.

Check the thread on loss coordination of legs. This is very serious diagnosis. It's not an injury like PF. It's a medical condition with no cure or treatment. It's likely has origin in repetitive movement like running.

LauraCattivera wrote:

Hi Kara,

I was diagnosed with runner’s focal dystonia after six years. I was 21 at my outset in 1989, squeezed through into the 1992 Trials 3000m and 1993 XC Worlds before it derailed me.

I have a lot experience with clinical treatment, orthopedic fallout and coping strategies, if you are interested.

Take care,

Laura Cattivera

Lcatwhite@gmail.com

Have you tried contacting on her IG? She likely won't read this thread.

Flagpole wrote:

Wow. Thanks for posting, Rojo. I wish her the best.

As she is 43 years old, the silver lining is that she at least was able to complete a full professional running career. Time to find other ways to be fulfilled and other ways to exercise.

+1

There comes a time when you need to accept the fact that you can no longer participate and or compete. Running at the elite level for many years is brutal on the body. Not only has Kara put in a tremendous amount of mileage, some of it very intense throughout her teens, twenties, and thirties, she's also logged some intense mileage in her forties while competing in Ultras. Let's not forget she's also done a good deal of her mileage at altitude which is more stressful on the body. Finding alternative ways to work out seems to be the best answer, and to completely retire from competition.

As quoted by the great Kenny Rogers-

"You need to know when to hold 'em, and know when to fold 'em". It's time for Kara to "fold 'em".

Best of luck to her.

wejo wrote:

This is heartbreaking to read as you can tell how important running is to her. But hopefully Kara can find joy in just being a part of the running community without running as much.I had never heard of this condition before but glad she figured out the diagnosis. It will spread awareness of it for sure. Best wishes to her and her family.

What a great, kind post...LRC jokes around and trolls a bit but there's some solid, mature responses here. :)

Is that what Suzy Favor had?

Good luck at the Mayo clinic. Expensive but worth it if you need a quack diagnosis.

Citizen Runner wrote:

I've never heard of this condition before. Per the review article linked below, there are very few diagnosed cases in runners, but apparently some relationship to the "yips" in golfers. Best of luck to Kara in dealing with this.

https://tremorjournal.org/articles/10.5334/tohm.670/

Yips and ye old Twisties are nuanced feelings of not having it, as it were. People go in and out. What KG has is a neurological disease.

I really hope that she was tested for celiac disease. Celiac disease is one of the more common reasons for unexplained neurological issues, and is tremendously underdiagnosed (only ~10-20% of people with it ever get diagnosed). Since Kara has Hashimoto's, she is at increased risk for celiac disease since both AI diseases are caused by the same genes.

I have celiac disease and sometimes experience neurological problems (ataxia, vertigo) if I have a flare-up due to accidental gluten ingestion. I would hope that the Mayo Clinic would have thought to check this, but many doctors are quite ignorant about the extraintestinal manifestations of celiac disease. It's worth checking out since if her neurological problems are secondary to celiac disease, they can be either mostly or completely reversed if a strict gluten-free diet is followed.

Very sorry to hear about the situation. It would be devastating to not be able to run.

Some info/studies:

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https://www.beyondceliac.org/research-news/neuro-symptoms-gobeyondceliac/

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https://www.glutenfreeliving.com/gluten-free/celiac-disease/neurological-symptoms-celiac-disease/

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https://www.frontiersin.org/articles/10.3389/fnins.2017.00498/full

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https://link.springer.com/article/10.1007/s11940-019-0552-7