Does anyone else suffer from foot dystonia? Anything work?

[HomeinVa]

After several hours of standing I am also crippled with pain. Being sedentary is not good either. Any one have any suggestions? Taking sinemet and requip.

[Hidden]

Yes, I did.Does it sort of turn under and it feels like your ankle is going to break and your toes are bent too? I got rid of it by taking Vitamin E. I learned this by taking the advice of someone from another board (I don't think it exists any more). My husband used to rub my feet, but that didn't help except it felt good. I told my neurologist about it and he didn't seem too impressed,but he said that if it works, I should keep on the pills. I used to take over 2000 units a day. Just anything you can get over the counter marked vitamin E will do.

You have to be careful since Vit. E can cause bleeding, so tell your doctor what you are going to do. Stop taking them at least 2 weeks before you have any surgery.

I am not taking it anymore since I had my DBS in February of 2001. That cured a lot of my symptoms.

[HomeinVa in reply to Hidden]

How wonderful for you! Wishing you continued success.

[Hidden]

Oh, I thought of something else. When my Sinemet took affect, it helped the dystonia

[merlethegirl]

I take SOMA, a muscle relaxer..it helps...when the Sinemet is working I can walk a mile.

Good luck.

[HomeinVa in reply to merlethegirl]

Thank you. I will investigate the SOMA. They prescribed baclofen, but I didn't like the way it made me feel. I have enough issues from meds.

[maryalice]

I have the same problem with my toes curling under and my feet turning in. My doctor dismissed it too.{probably because he didn't have to walk on them}

They seem to relax when I do. I'm not taking Sinemet. I'm taking Mirapex.

[FrankBerson in reply to maryalice]

I am on slevo 200 I noticed one morning that my toes were curling under and it became dificult to walk. I don't know what to do to .

[maryalice in reply to FrankBerson]

I haven't found any lasting cure. If you talk with a PT they may be able to help you /

[SherriW]

I have the same problem, and I find walking it out helps. Sometimes. Used to take Vit E more than I do now, so maybe that does make a difference, as I haven't taken as many lately and the dystonia is worse.

[Timodopa]

I'm now on Amantadine. This has helped me with my dystonia.

[PatV]

Yes, toes curl under, or ankle turns out. Also painful tendonitis in inner thigh. I have to stretch affected parts, not always socially accepted behavior! Fortunately I am often in situations where it is acceptable to take off shoes

[BrandonT in reply to PatV]

I thought i was the only one

[MagicMax]

Too much L-dopa can cause dystonia and other side effects. Cut back on sinemet, and take 300 to 400 mg of Gabapentin instead (it helps greatly with nerve pain). I recommend not taking Amantadine because it contains Sodium Lauryl Sulfate (numerous sites on the web address the negative effects of SLS).

[HomeinVa in reply to MagicMax]

Thank you. I will research Gabapentin. I also start suffering severe dystonia in the neck.about 20 minutes after dosing so I know it is med induced.

[batwing7 in reply to HomeinVa]

Hi-I was drawn to your comment about what you described as 'severe dystonia in the neck about 20 minutes after dosing'....this is the first time I have seen a reference to a major issue with Sinemet. Briefly, I find it so hard to balance how much to take-too little and my right foot turns in, too much and I have this uncomfortable neck tightness. The latter is accompanied by contortions of the mouth and speech is strained. This can last for up to an hour.

[Anemone]

So, as it goes, mixed opinions. Here's mine. I have suffered from this for years, pre dx. I still suffer, but not so much. When I do, I pop an extra sinemet--and it helps. I'm already on major dosage of Sinemet, and it has been a true blessing to me.

Pre dx I tried baclofen for years, even though it didn't help. I do think standing up and flattenting the foot/feet out, using a strap to flex the foot/feet helps. Be careful standing--be sure someone is there to help--I've tried by myself before, and fallen, something few of us need. Good luck with this. I haven't found my wonderful Movement Distorders Neurologist (or any of the many docs I've had before) to be concerned. It's been at those times I'd like to give them a sample--bet they'd sit up and take notice then. So sorry you're going through this. I also have this in my torso--makes putting shoes and socks on rather tricky. Best wishes to you.

[HomeinVa in reply to Anemone]

Thank you for sharing. The new doc gave me baclofen, but I didn't like the way it made me feel. Her pt told me she can brace my ankle if I don't find relief with lower dose. We are still tinkering with meds. I do not think I should still be on sinemet. I think I should have been taken off after confirmation. Now I am addicted. At least my new doc is concerned and trying to help. Wishing you best of luck and keep mmoving.

[HomeinVa]

Thank you all very much for your input. It gives me a lot to research and get prepared for my nexnt appointment. I know the ankle turning is caused by the sinemet. The toes curling under is the final sympton that brought the diagnosis of PD. Has anyone tried botox? Someone also told me about that.

[maidar in reply to HomeinVa]

Yes I have been having Botox shots every 10 weeks for about a year! Actually at first they helped with the curling toes but now they seem worse! I am going to for go the shots in my feet thee next visit which is next week! I am continuing to get Botox for the dystonia in my neck!

[Dannismom in reply to maidar]

Had those shots in the past and after the first treatment they never worked, my extremities seemed to do worse. Now it is to the point the cramping and turning lasts all day and I can't even walk.

[cinziagiannni]

I have idiopathic PD akinetic rigid syndrome (to the best guess of my neurologist) and I too suffer with foot dystonia. I have had BOTOX treatments on my right foot. The first set of shots gave a surprisingly dramatic improvement-- my toes literally straightened out 2 days after the shots and stayed that way for about a week. The beneficial effects lasted 4-6 weeks. The second time I didn't get the straightening effect but did have increased mobility for about 4 weeks. I am now in the process of scheduling my third session. I recommend this treatment although it isn't pleasant. needle up the sole of the foot and my doctor has an iron grip that hurts more than the needles.

[BrandonT in reply to cinziagiannni]

Any side effects?

[Danny2401]

Hi, I think all every Pd sufferers should tell our Neurolgists your ???? I'm completely starting to loose it, I had three toes broke since July 2012. On 6th Dec I had an operation , I had 1 toe with an old break which had self healed, I nicknamed it the hunch back of Notre Dame, and another toe disjointed. I thought it was a rare item, until I went to the next meeting of my local Pd group[ Enfield ]. 3 other people had exactly the same claw toes. I also suffer with very tight shoulders every first monday of the month and third Monday we meet at Skinners Court, Fox Lane, Palmers Green, London from 10am to 1pm, you can get a shoulder massage and a hand massage, and lunch for £3 a head, I would like to invite anyone involved with Pd to come, we can talk all about our Pd thoughts . ask for Danny Wilson 02083604476

[Parkiewife]

Ask doc to put you on Artaine (I sent a recent post regarding this.). Good luck!

[Maddy88]

I have really bad dystonia In my feet/ ackle really bad that kind that makes me worry about my ankles is going to break I just started wearing an ankle brace oh a whim and It seems to help

[tid1]

I had severe pain when walking because my toes would curl under and the foot would turn out. It felt like the muscles in my one foot were trying to pull it apart. I found that walking around the house in slipper socks with rubber spots on the bottom works better than shoes as my toes can't curl under as much and the weight of my body forces my foot to flatten out. So then I tried walking on the treadmill in slipper socks as it was too painful to walk on the treadmill in shoes. I am now walking about a mile a day on the treadmill at a fairly fast pace. My foot started to feel a lot better after 3 days of walking on the treadmill as fast as I could. A fast pace doesn't give my foot time to cramp up between steps. Walking every day has relaxed the muscles so now I can walk in shoes to run errands with little pain. I felt like it was a miracle! I think I was just caught in a Catch 22 - I wasn't walking much because it hurt so much and the muscles in my foot cramped more and more because I wasn't walking much. I also take Magnesium Citrate when I go to bed to minimize leg cramps at night and this helps a lot too!

[akgirlsrock]

Potassium, Magnesium, look up morley Robbins Magnesium protocol, aka Magnesium man. Facebook as well. I've be using his protocol off and on, it's not for Dystonia specifically, but I just found out it's been working for me.