Not what you're looking for? CLICK HERE INSTEAD



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

Click here to post comments

Join in and write your own page! It's easy to do. How? Simply click here to return to Ask the doctor.