After reading what I wrote - I feel a need to clarify a bit.

I currently take 3 Sinemet pills a day - spaced about 4 - 5 hours a part. This is what my doctor told me to do and it has worked well for me up till now. My doctor also told me that I can increase it to 4 pills a day - spaced closer together - when I felt I needed too. I have been on Sinemet for a little over a year now and thought that dyskinesia usually occured after a period of several years of being on Sinemet. So I am thinking it is probably not dyskinesia.

I am use to the tremors, my leg being jittery - but the rolling motion of my foot is what is new and confusing me. I am thinking it is still a part of the tremors and that it is occuring because the Sinemet is wearing off sooner. But I just wanted to run it by my friends here to see what your experience has been.

Of course I will be checking with my doctor to get his thoughts too.

Thanks again!

I'm was on the same dose of Sinemet and having similar issues. My doctor upped me to one and a half pills 3 times a day. It has helped some, but I still get the week legs and cramping.

I am a little worried myself about the dosage, as I'm in the early stages of PD and don't want to become immune to it. However with that said, the added dose has def helped me.

Hi Carol I think you have dystonia , except you do not have cramping or pain.I have similar thing, when my medicine is warring of my toes in a left foot start curling down, into my foot. Not painful ,just hiding . Soon as my meds kick in it goes away. So I concluded soon as dopamine in your body falls below certain level, your body tell you that it needs more. I can controlled tho, by spreading my toes and walking consciously on the whole foot. I do that until i take my meds and after while it goes away.

The movement and lack of pain sound like the dyskinesia I get when my Sinemet kicks in but for me it goes away as medicine wears off.

This started to show up when I when from 100 mg dose to 125 mg dose. If I go back down to 100 mg, it goes away but unfortunately all my other PD symptoms come back. My doctor has started me on Amantadine to see if that will help relief the dyskinesia.

By the way, I avoided Sinemet for 4 years and have only been taking Sinemet for about 1 year. My dyskinesia appeared when I moved to a higher dosage and goes away at lower dosage. From what I have read and experienced dyskinesia is many related to level (mg) of sinemet your body can tolerate and not how long you have been taking it.

That is a very good question, CM one that confuses me a lot, too. Tremor, dyskinesia, or dystonia which am I dealing with today? (Maybe a little of all three). Despite my diagnosis 15 yrs ago, its only been in the past two yrs that Ive begun regularly experiencing the above afflictions including freezing, and its scary.

For me, it also began with toe rolling of my right foot. Like Zlata, I try walking it out & also use yoga toes firm foam thingies that you use to spread your toes apart for about 15-30 minutes. Those separators not only straighten out my curled toes, I can also feel them working on my legs.

As for the above terms, you gave me motivation to look them up. Heres my interpretation of what I read. If Ive got it wrong, please someone jump in.

Tremors: Rhythmic movements visible at rest or when moving. When I get them in my legs, the sustained clench-release contractions make my legs ache.

Dyskinesias: Caused by 1) the inevitable advance of the disease and/or 2) medication, primarily Sinemet. Dyskinesias are involuntary, unnatural-looking movements, like shoulder-rolling, or jerky arm and leg movements.

Dystonia: Still a little confused about this one. It seems it presents the same as dyskinesia, but can be a symptom of many other diseases or conditions. Its onset doesnt appear to be associated w/meds.

Exercise, bi-weekly massage, & a good nights sleep all help. But since the advent of these newest developments, I find my body & mind more tired always tired, in fact than ever before. Have you had this problem, too, CM?

Bari

We've struggled with the dyskinesia vs. dystonia situation for a few years, too, as my mother who has PD developed what we now know as "foot drop." As good as her neurologist is, he believed it to be dyskinesia, refusing to believe it's dystonia as I had maintained for the past few years; although Amantadine (generic: Symmetrel) has helped with dyskinesia in her back (she pushes backwards rather than forward to get up from a seated position), her foot got progressively worse. Finally, last November, he diagnosed her with dystonia and recommended foot surgery since the foot drop had gotten too severe for Botox injections to do any good. My mother had foot surgery in December, my mother underwent foot surgery during which her Achilles tendon was severed, at which point her toes curled under and couldn't be straightened, which required a tendon under each toe to be cut. She was in a cast for a month without side effects and has been walking accompanied and with her walker again (a mere 20 min. or so four or five times per day, which has been a wonderful improvement). We are no vigilantly keeping our eyes on her left foot, which is showing early signs of the same problem to catch it at the right time so that the neurologist can give her Botox injections rather than face another surgery...and anesthesia. FYI - In the beginning of the foot drop, there are good and bad periods. I can't recall whether it was Sinemet-influenced, though. Eventually, though, the problem just got worse until, last summer, when my mother became pretty much completely wheelchair-bound. While she still spends a lot of time seated during the day, she's at least able to get up and walk short distances throughout the day in addition to her 20-minute accompanied walks.

Update - I added another Sinemet pill so that I was taking it 4 times a day instead of 3. That seemed to help a bit, but I still felt off. And it seemed like the Sinemet was only lasting about 2 - 3 hours before the jittery and the rolling foot would start back up again. But after about the 3rd week of taking the pills 4 times a day - I started to feel weird, kind of like I was over medicating. Plus my symptoms seemed to calm down and so I went back to the 3 pills a day. And I have stayed at that level for the past week and seem to be doing fine. I actually feel close to the same as I did before this all started up except I do occasionally have a minor foot roll when it gets close to taking another dose of Sinemet - which is now 4 - 5 hours apart and the rolling stops when the new dose kicks in. I am curious to see if the 3 pills a day will keep doing the trick for a while now.

Has anyone else had their symptoms ramp up and then go back down again like this? Any thoughts on why this happened? It's allergy season - could that play into this? Or maybe some kind of minor bug that my body was fighting off. Thoughts or ideals??

I have an appointment coming up in about a month so intend to run this buy the doctor.

DYSKINESIA AND TREMOURS.

THIS ISSUE COMES TO THE FORE QUITE OFTEN.

THE QUESTION BEING ASKED IS, HOW TO TELL THE DIFFERENCE BETWEEN DYSKINESIA AND TREMORS AND, IF I UNDERSTAND CORRECTLY BETWEEN DYSKINESIA AND DYSTONIA.

DYSKINESIA IS THE RESULT OF LONG TERM USE OF ANTI PARKINSON MEDICATION,
IE DOPERMINE REPLACMENTS.
IF IT IS TO PRESENT, ( NOT EVERYONE DEVELOPS DYSKINESIA AND WE CAN BE THANKFUL FOR THAT) IT IS USUALLY AFTER ABOUT SEVEN YEARS OF TAKING DOPERMINE REPLACEMENT.

BEING OVER MEDICATED CAN AND, DOES PRODUCE DYSKINESIA LIKE SYMPTOMS, SO BEWARE AND BE AWARE OF THIS IF YOU CHOOSE TO SELF MEDICATE.

THE SYMPTOMS OF DYSKINESIA ARE EASY TO SPOT AS THEY ARE COMPLETELY DIFFERENT TO RESTING TREMOURS, OR SHAKING OR QUIVERING, CALL I WHAT YOU WILL.

DYSKINESIA IS BEST DESCRIBED AS, UN- NATURAL MOVEMENTS OF THE LIMBS, TWISTING OF THE TORSO, ERRATIC MOVEMENTS OF THE HEAD, CAUSED BY NECK MOVEMENTS.

BEFORE UNDERGOING DBS, I PRESENTED WITH HYPER DYSKINESIA, WHICH WAS A LIVING HELL.

IF THERE IS ANY DOUBT AS TO DYSKINESIA, THEN AS ALWAYS, THE PEOPLE TO CLARIFY THIS ARE THOSE QUALIFIED TO DO SO, YOUR TREATING SPECIALISTS.

I WISH YOU ALL WELL,
MAY YOU,
DEVELOP AND MAINTAIN A WINNING POSITION.

Stewart / ALIVEO

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