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7050533 tn?1403192161

Is Curling Toes Dystonia?

Hello All,

I have been lurking around here since last November when what seemed like neurological symptoms began. I first noticed a stiff left ankle for several days, a couple of times painful sexual intercourse, what felt like water pouring over left knee, crawling/tingling on bottom of feet, and cold tingles in left shoulder.

By first week in December I was leaking urine everyday.  Most of it happening in the morning after a shower, 2 glasses of water and 2 cups of coffee.  I can't feel it happening and it is not from coughing or anything like that.  On weekends, not so much or none at all. Routine is different as far as shower and liquids.

Was referred to neuro by PCP.  Had brain and cervical spinal MRI.  While waiting for appointment to go back for results, my toes starting curling under on their own.  I can bring them back but they will continue doing this.  It happens mostly on my right foot but a little on left too.  When I went for the MRI results (it was unremarkable)  neuro said this is dystonia.  He gave me a muscle relaxer but didn't have any diagnosis for me and said maybe I was depressed. Or, he could send me to the University hospital.  I decided to take a break and see what happens.

By middle of January, all symptoms (except for uninary incontinence)  went away or were hardly noticeable. However, last week my left ankle was stiff and sore for 3 days, the tingles on bottom of feet have returned, and the toe curling has returned.

My question is Have any of you had the toe curling and what was the explanation for this?  

Can all of this be stress and/or depression?  How would I know if so?

Many thanks,
Robin
5 Responses
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1831849 tn?1383228392
I'm pretty sure my initial brain MRI was not done using the MS protocol and I know i was done on a 1.5T machine. It was enough for the first neurologist I saw, a non-MS neuro, to tell me she was 85% certain I had MS. She was 100% right :-)

The 3T machines are nice, and may pick up things a 1.5T won't, but many, if not most, of us were diagnosed using 1.5T images.

Kyle
Helpful - 0
7050533 tn?1403192161
Thank you  all,

I knew I needed to get those MRI reports but I just kept putting it off.  I will request the reports from the MRI and see about getting in with some of the Neuros at the University hospital. It may take 6 months to get an appointment, but I do know that they have a 3.0 Tesla MRI machine there.  

Something that has been bothering me is I am pretty sure that this previous MRI I had was not done with MS protocol.  I had the order from the doc and it didn't say anything. I am not saying that I want to have MS at all, I just want some answers and I am sure that something is wrong.

How important can not ordering the MS protocol be?  And, would the 3.0 Tesla machine be worth the wait and the money I would have to pay out of pocket?

Many thanks,
Robin

P.S. By the way, PCP ran tons of tests like Lyme, B12, ANA, Vit D, RA, etc. All fine.

Helpful - 0
1831849 tn?1383228392
I'm with JJ. Time to find a new neuro. Neuros who default to psychological causes are either lazy or stupid.

Kyle
Helpful - 0
Avatar universal
tI think but don't know for sure that dystonia can cause spasticity, which is what might be happening here. Muscles contract because the pull on one side is stronger than the push on the other, all influenced by faulty nerves. Our health pages have good info on this.

I've never had fingers or toes curl up, but on a lighter note, I've several times had toes fan out and up, one at a time. Sort of looks like a routine by the Rockettes  :-)
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome Robin,

I'm going to go out on a limb and call that neurologist an a$$, whilst its true painful sexual intercourse is commonly associated with psychological issues, you'd be hard pressed to find it ever described as......"water pouring over left knee, crawling/tingling on bottom of feet, and cold tingles in left shoulder" and when you add the spontaneous bladder dysfunction after a shower and toes curling, it sounds nothing like "stress and/or depression" that i've ever heard of and definitely sounds to me like you've potentially got a physical cause in what is happening to you.

Apart from foot cramps, sorry i've not experienced my toes curling but i have experienced a few times now, this painful stab in the middle of my right arm and then one of my fingers (middle) will bend and lock tight in a weird position but i haven't had it checked out because it's not happened often enough. I can recall a couple of other people that have had a limb bend into a weird position but not specifically toes from memory, hopefully they will notice your question and let you know what name was given to it.

Dystonia is related to a very long list of conditions, and there are also mimics too and dystonia appears to have quite a few different types and is not always simple to diagnose see..... http://www.dystonia-foundation.org/pages/neurological_and_metabolic_disorders/80.php      

I think it might be worth getting a copy of your MRI's and see what the reports specifically mention (if anything) and consider getting a second opinion from a  neurologist who specialises in movement disorders eg dystonia, parkinson etc

Cheers...........JJ
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