Any other PD people out there...your major PD symptom is toes curling up on both feet

[willason]

Hi to everyone. I haven't signed in for awhile, so I hope all is well with everyone. The last time I signed in, I was going in for my first colonoscopy (April/May of 2019)...and I am happy to say that I got a clean bill of health for my colon and don't have to go back in for colonoscopy for 10 years. But regarding my PD...I was diagnosed with PD in June of 2016 by a Movement Disorders Specialist. Periodic, uncontrolled toe curling on my left foot only...was what caused me to see a physician prior to diagnosis. Since the PD diagnosis, I've been taking Carb/Lev 25/100, and it has been effective in controlling those symptoms.. Also, a few years after diagnosis, toe-curling started on the right foot also, so Sinemet controls both feet now...however, when I eat...an hour or 2 after eating, the toe-curling SOMETIMES starts up again, until the Sinemet kicks in. Other than the toe-curling, I don't experience any other major PD symptoms. My hands are a little shaky/unsteady if I hold my hands out and try to steady them, but it is very minor. When I'm laying down in bed, I can feel my legs a little shaky, but that is also minor.

My question is...are there any other PD people out there whose major PD symptom is foot toe-curling (both feet) ONLY. And how do you deal with it. I know there is something called "foot dystonia". Sometimes I wonder if I have that. I'm also considering DBS for the toe-curling to possibly reduce the number of Sinemet pills I take daily. If anyone has any input, would love to hear it, no matter how minute the input is.

[Kwinholt]

Hi there. I do have foot dystonia . My toes can curl up or down depending on what they decide, Also my ankle will lock causing my foot to turn sideways. That was my first symptom about 8-9 years ago. I am an ultra runner and that kept causing me to fall. After diagnosis I started receiving Botox injections in the bottom of my feet and in my legs every 3-4 months from my PD doctor. It works for me and I take carbadopa/levadopa , azilect and Comtan as well. Botox is one of those things that work for some but not all. Worth a try, but make sure your insurance covers it. Of course over these years as my disease progresses I have other symptoms and issues but the curling toes are very painful. Hope this helps you. Take care. Karen

[willason in reply to Kwinholt]

I have a college friend who developed a neck dystonia. He gets botox injections every 3 months, and it works for him. He's been encouraging me to try it. My PD physician has suggested DBS. So I have a couple of options. As I said earlier, the Carb/Levodopa controls my symptoms for the most part, but some days I have to take 8-10 Sinemet 25/100 pills to make it through the day...and that number of pills concerns me. Anyway, thanks for responding...something else for me to ponder.

[Kwinholt in reply to willason]

I totally understand about the amount of sinemet being concerning , I as well take 6-8 a day too and they make me tired. My last visit , last week, with my PD dr , DBS was talked about as well. Something to think about but we will still have to take some CD/LD just not as much after DBS the way I understand it. I am also getting cervical dystonia so it’s good to hear the Botox helps your friend bc I’ll be getting it in my neck too. Karen

[willason in reply to Kwinholt]

Yes, my friend says the botox for his neck allows him to proceed with his life, and he's always been very active, so if it works for him, hopefully it will work for you as well, i.e., neck. Good luck with that.

[Cbgs in reply to willason]

Try adding controlled release C/L

It has helped me in taking fewer immediate released pills

[ddmagee1]

I have PD, and my left side is affected the most. My left toes curl up, and I get foot spasms, in my left foot (dystonia), that have caused me to fall, several times. I take 6 Sinemet tablets a day. ( 2 tabs, 3times a day).

[Cbgs]

Botox shots in calf muscles has helped me

I would def not undergo dbs just for your minimum symptoms

Be well

[Aleagles]

Getting DBS is mostly about reducing tremor. It’s a big operation too but for me worked out well.

[Mimer]

Have you tried the online dystonia recovery program (dystoniarecoveryprogram.com)? I think they still have an offer for the first month free of charge. I am on my second month myself now and have done some progress with my the curling and hand dystonia. I prefer to try neuroplasticy excersices before botox or medication.

[Smittybear7 in reply to Mimer]

Who diagnosed you with dystonia? My big toe turns up when I sit. When I sit my quadriceps cramp and my big toe raises. If I stand up it usually relieves it. I spend most of my day standing or laying down. I eat standing up. Sometimes my effective hand also curls. I am taking 1/2 c/l twice a day 8hrs apart to determine if I have Parkinson's. 1 week and no changes. Tremors are a little more intense. Been to many specialist and so far no answer as to the cause.

[pmh18623]

My right big toe started curling up in January. While not my major symptom, (mainly gait) is sometimes the most painful one.

I finally saw my MDS last week and he suggested pickle juice! (technically a muscle spasm) and he did not increase my CL 25-100 beyond the 3 x a day already taking since diagnosed October 10th, since my hand/arm dystonia has improved.

I am on the fence as to whether pickle juice actually works.

[Smittybear7 in reply to pmh18623]

I've heard about pickle juice relieving cramping. Not sure how much and how often to take it Let me know if you have any success. Good luck it's very painful

[Smittybear7 in reply to pmh18623]

My current diagnoses is Parkinsonism. Have you had a nerve conduction test? All the specialist I am seeing say I should have one done to see if I have nerve issues. MRI shows osteoarthritis and a bone spur L4-L5 but they aren't sure that is what is causing the cramping and big toe issues. Options pain medications, cortisol injections or surgery.

[Smittybear7]

I have heard the same advice. How much do you take ?

[chantingwpd]

Hi - I’m 69, diagnosed in 2010. Except for losing my sense of smell about 20 -25 years ago, my first symptom of PD was my left big toe curling up, and my left foot being achy and sore at the end of the day from being bent and curled. I saw a podiatrist who did nothing so I just walked around with a sore foot and holes in my socks and shoes on the left. It wasn’t until I saw a movement disorders specialist that I learned that the whole toe business was from PD. My C/L has helped, and my Neuro has offered to shoot me up with Botox, but I’m a total wimp when it comes to needles into my feet (yikes! Hard just to write that!)Best wishes!

[Sherry1960]

I had painful foot dystonia for several years. It was my main parkinson symptom. It started in my left foot but went to my right foot., too. My MDS recommended DBS. I tried Botox but it eventually stopped working. I initially said no as it scared me. I finally came to the conclusion that if I wanted any quality of life of life, I needed to go for it. I was 62 so In June 2022, I had the surgery. My neurosurgeon specifically targeted the areas in my brain that affected my feet. I was awake during the surgery so I was able to move my feet to let him know. I was able to reduce my medication. Praise God…no more dystonia! I walk several times a day with my husband. It changed my life. I know it is a personal decision and you have to be comfortable with it. Hope this helps you.

[Baca]

My wife is still having her toes curl. She wears two pairs of socks to control them. I bought her some silicone toe correction devices but she doesn’t like them so she still wears a thin pair of socks and a thicker pair over them to be comfortable.