Big toe sticking up= dorsiflexion of the great toe

Hi Mark,

I read the post about the woman with a big toe that sticks up, and I know what that is. I wrote in to you about 3 years ago with a similar problem and attached my you tube channel "big toe sticking up" on my channel Midnight Foot Theatre. I did not write you back to thank you for directing me to my diagnosis. You took some time responding to me and I was a bit discouraged until you replied and mentioned that you didn't know what was wrong with me, but that it sounded neurological, perhaps MS or Parkinson's .

I had already been tested for MS, ( I have a paternal uncle that died of MS and a maternal cousin that had the surgery down in Costa Rica, and is currently medication free). I started reading about Parkinson's and was struck by the fact that my husband bugs me that my arms don't always move when I am out walking. At the end of the Parkinson's website was a link to the Dystonia foundation of Canada. The phrase 'dorsiflexion of the great toe" was all I needed to convince myself that I had finally after all of this pain and suffering figured out what was wrong with me. ( people also posted videos on my channel of strange foot movements). it took about 6 months to convince a doctor to refer me to a movement disorder neurologist at the Pacific Parkinson's Centre at University of British Columbia in Vancouver. Then another 9 month wait to see my Neurologist Dr Cresswell. After a lengthy neurological exam and cognitive exams, I met with my new Doctor who watched my videos (I gave you an honourable mention for pointing me in the right direction) She asked me what I thought I had, and she confirmed that I have dystonia. Specifically adult onset dopa responsive dystonia.

She prescribed levocarb (sinemet in Canada) and I take that 3 times a day and an MRI of my brain, and 24 hour Copper test to rule out Wilson's Disease. I still have triggers like cold floors,swimming, standing on hard floors and turning of my foot inwards. But I was leaps and bounds over where I had been. This past May I had a terrible episode of dystonia that left me begging for an ambulance. After about 45 minutes of this kind of muscular tug of war in your calf, death seems like a reasonable answer to your pain, but I kept pressing on the muscle and eventually at the hour mark it subsided, and I was left in a puddle of sweat on the floor. I limped for a couple of weeks, and still have a lovely spider vein in that spot to remind me of that night.

I decided then and there that at my next appointment with Dr Cresswell that I would get Botox injections to help me lead a better quality of life, that would lessen my spasms. I have since had the injections twice and it was a life changing experience. I still get the spasms, but they are more muted and less frequent. The Botox lasts about 3 months, but started tapering off at the 8 week mark. I asked Dr Cresswell about a prescription for something to help me if a catastrophic spasm happened. She told me to crush a sinemet tablet and mix it with some coke, or orange juice and drink it. It is an Immediate release medication and should help within 15 minutes.

Again, I really appreciate that you responded to my inquiry, and that your mention of Parkinson's helped me to find my way to a diagnosis of this difficult to diagnose disease. Most patients see on average 16 doctors before they are diagnosed. I hope that you can help other people that ask for your expertise in the future.

To all of the doctors that told me that ' it was all in my head'. They were partially right as it is neurological.

I am hoping to start swimming again as my Botox injection was about 17 days ago and it takes about 2 weeks to become completely effective.

Thanks again, I hope this posting helps you out!

Sincerely,
Barb D.

RESPONSE

Hi Barb,

Thanks for your kind words, I am glad that I could play a small part in the diagnosis of your problem (and subsequent improvement).

Marc Mitnick DPM