Jim, that is exactly what I had! Same side, too. I was walking on the side of my foot and looked pretty terrible when I 'walked'. I was all twisted and it was really painful. Baclofen fixed it.

I had bilateral clubbed feet. Had to have shoes with braces like Forest Gump!! Life is like a box of chocolates...

Jim,

This maybe part of the problem. With your achilles tendons being weakened due to the clubbed feet, you have the tendency to turn your foot in so when the dystonia hits, it adds insult to injury.

I too wore the braces between the feet as well as casts until I was 5 years old.

Have you talked with an orthopedic surgeon, not so much about surgery, but about some exercises and perhaps some shoe inserts to force the foot to lie straight within the shoe? This may help you from wearing down the outside of the shoe and keep your foot straight.

Life sure is like a box of chocolates. We only hope that some are nice nutty clusters and not all soft gooey sweet creams.

John

Thanks to all who have replied to this thread, and apologies for not being back sooner - I have got stuck into doing my garden, and have to deal with inevitable overwhelming fatigue, but ~I wouldn't forego it for anything, I love this time of year.

It is really interesting that so many people have this symptom. I too had dystonia as an initial symptom, and sinemet dealt with it wonderfully. It is all creeping back though, and I have internal dystonia too, which is pretty uncomfortable, along with increasing balance issues.

Ibby, I have wondered a lot about whether this is the beginning of a different stage, I have just hit five years on sinemet and keep thinking is this the start of what all the warnings are about. On the other hand, if I do try to add to the meds I am taking I wind up with side effects I would rather not have. So I share you interest in looking at this possibility!

On the plus side, I am fortunate enough to have a PD nurse specialist in my area, and I have contacted her to see what I can do to tweak meds or possibly add something like baclofen, as this particular symptom is causing me more mobility issues than anything else. Anyone else find it easier to talk to someone like this than to the neuro? Or maybe that is a whole different topic!
I see her on May 1st and will report back on anything helpful.....

Best wishes to all epsicially all with dystonic feet, may your steps be light and painfree, I wish everything for you that I would wish for myself!

Lindy

I have dystonia through out body as primary symptom...No easy fix everyone said preety much what i will input. message it out,jet tub SOAK SOAK SOAK, sinemt controls mine for now for most part....off periods I look like a pretzel. Also Stretch and work out. I started some meditation and with control breathing sometimes the twist will release earlier this is very hard to do given the pain, but I have found no matter what part of body is acting up if I take a deep breath think about controlling that area, the twist goes away. can not prove that medically...just seems to help get me through it.


Hope this helps,

Kman

I have been on Sinemet for 11 years (if I'd only known where that would lead). I have foot dystonia as soon as I take my meds sometimes for up to an hour. Left side dominant foot turns in and my big toe laps over the one next to it. I notice my toes are curling under as well on that same foot. My legs start vibrating followed by cramping and muscle rigidity in my calf's, thighs and now my hips. It is so painful and is getting hard to take day after day. I am also starting to experience wearing off dystonia. It starts with tingling and numbness in both feet. It is difficult to walk most of the time so I don't. To tell you the truth I am scared stiff (good analogy huh!) on what my future holds. I want to exercise but over time I have become de-conditioned. I have reduced my RR Sinemet and the goal is to be on CR and slowly reduce that as well. I am considering trying Mucuna pruriens, liquid Sinemet or Madapar. I take all the supplements that are known to be helpful I have had to add Clonazepam and Baclofen. It is only a matter of degrees how helpful any of this is. I mortified that I have to take drugs and in shock that this is happening to me. I now realize that I have been in complete denial about how bad this whole deal could be. Everyone tells me that I am a fighter; well guess what that theory is based on......HOPE. I am facing REALITY. I try to believe your body believes everything you tell it which worked somewhat in the past for small periods of time. Right now I am confused, scared, alone and self isolating, living in a new town with few connections. I try to keep this in perspective and say tomorrow is a new day.

Smith, many people take very high doses of baclofen. If you raise the dose slowly (every few days about 5 mg), your body adjusts to it. (My first 5 mg almost put me to sleep.)

If you take 30 mg or higher a day and want to discontinue it, you must taper down slowly. It's dangerous to go cold turkey.

If I'm late taking baclofen, I get muscle spasms and cramps, too in my right leg, especially the thigh.

I also take artane , an anticholinergic, which helps with dystonia, which I also have in my right arm and hand.

Off painful dystonia in Parkinson's disease treated with botulinum toxin

Abstract
The off painful dystonia (OPD), usually concerning the feet, is a type of abnormal involuntary movement, induced by the chronic use of levodopa. It is mostly observed in the advanced stage of Parkinson's disease (PD), particularly in the early morning, in the evening, and late at night. Indeed, some patients have experienced OPD also during on periods when dystonic posture of the foot alternates with dyskinesia. The pain probably is due to sustained muscle contraction, which causes prolonged muscle spasm, as in primary dystonia or torticollis. Dopaminergic drugs like bromocriptine, pergolide, and especially apomorphine (s. c., infusions, or bolus), can dramatically improve the OPD. Anticholinergics baclofen and lithium are also used in the management of OPD with some benefit. On the other hand, clinical experience shows that in many cases, these therapeutic procedures are not always enough to produce the expected results. Thirty PD patients (22 men and eight women) with OPD of the foot were treated with botulinum toxin (Botox, Btx) using electromyograms to guide injections. Dystonia was evaluated using a quantitative rating scale. The selection of the muscles for Btx treatment was carried out on the basis of foot posture. We injected Btx into tibialis posterior, tibialis anterior, gastrocnemius, flexor digitorum longus, and extensores hallucis longus with a median dose 40 IU for each muscle, distributed in two sites. In all patients, the pain improved within 10 days, whereas in 21 patients, the pain disappeared completely for 4 months (range, 3-7 months); a concomitant improvement in intensity of the dystonic spasm was also observed. No side effects were reported. Seven patients with associated on foot dystonia described an improvement of foot posture on walking. In conclusion, in this uncontrolled study, the use of Btx in OPD seemed a promising tool to improve pain linked to foot dystonia; however, because of the well-known underlying dopaminergic defect in OPD, the Btx therapy should be considered only if the dopaminergic treatment established for the management of OPD has failed.

http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

Dystonia and parkinsonism.
Jankovic J, Tintner R.

Parkinsonism and dystonia may coexist in a number of neurodegenerative, genetic, toxic, and metabolic disorders and as a result of structural lesions in the basal ganglia. Parkinson's disease (PD) and the 'Parkinson-plus' syndromes (PPS) account for the majority of patients with the parkinsonism-dystonia combination. Dystonia, particularly when it involves the foot, may be the presenting sign of PD or PPS and these disorders should be suspected when adults present with isolated foot dystonia.

Young age, female gender, and long disease duration are risk factors for PD-related dystonia, but dystonia in patients with PD is usually related to levodopa therapy. The mechanism of dystonia in PD is not well understood and the management is often challenging because levodopa and other dopaminergic agents may either improve or worsen dystonia. Other therapeutic strategies include oral medications (baclofen, anticholinergics and benzodiazepines), local injections of botulinum toxin, intrathecal baclofen, and surgical lesions or high frequency stimulation of the thalamus, globus pallidus, or subthalamus.

http://www.ncbi.nlm.nih.gov/pubmed/11489676