[ksrandolph]

I will see a movement disorders specialist for first time on 3/17.
Starting 5 months ago at the end of a titration off of years of opiod pain meds, I began to
experience non-stop (24hrs/day) rhythymic contraction/relaxation of the muscles that move my toes.
We have tried everything: all the restless leg syndrome meds, iron supplements, herbs, essential oils,
a leg brace, but nothing works and the movement is getting more intense as time goes on.
I hear a drumming in my head in unison with the leg movements. It has spread from one leg to
both legs. I am afraid and in distress. Any ideas?

[chloe]

Sounds like it could be a kind of focal seizure, or maybe myoclonus. Your visit to the movement disorder specialist should be very helpful. I have myoclonus, which in me looks like non-rythmic jerks that affect every muscle of my left side. I went to Mayo Clinic in Rochester, Minnesota, and that turned out to be the best choice I could have made.

[In Him]

I would love to hear what your doctor has to say about the foot movements.

I had a surgical procedure aproximately 1 year ago (Modified Kidner) and the surgery required the use of a Cadaver Achilles Allograft to reattach my Posterior Tib Tendon. Following the surgery I was left with continual spasms in my 5th toe. It is a rythmical movement very similar to what you are describing. I was also left with other nerve issues.

After several months I was told that I needed a Tarsal Tunnel Release and that should do the trick. I had the surgery and they used a NeuraWrap to try to protect the nerve too. This slowed down the spasms for a short time (a couple of months) - never completely stopped the spasms, but then the spasms started to increase again. Now they are continuing to get worse - more intense.

I've seen 8 doctors (DPMs, Orthopedic Foot & Ankle specialists, Neurologists and Pain Management physicians). Everyone has stated that they have never seen this in a patient before. It has been called a form of dystonia - only due to the lack of a real diagnosis.

My current PM doctor is willing to do what ever is necessary to try to diagnos this and to treat it. He has even taken a video of my foot and is trying to have some Neurologists review it. He will be doing a focal EMG next week. We know that the Abductor Digiti Minimi is firing, but we're not sure if it is the primary muscle involved. I was told by another physician he thought it was tied to the lateral plantar nerve (coming off of the Posterior Tibial Nerve), but my PM doctor states that is a sensory nerve not a motor nerve. Thus that is impossible. He is suggesting Botox as a last ditch treatment to try to give me some relief. I don't want to do Botox because it will stop me from getting a true diagnosis and it is not a long-term solution - it is a 3 month bandaide.

Please email me and let me know what your doctor had to say, if they were able to diagnos you and what the treatment plan is.

My email is: [moderator note: e-mail address has been removed]