[Blackfeather]

Can sinemet or c/l relieve dystonia symptoms. I am experiencing some major cramping and muscle contractions in my right arm. So far I have resisted taking c/l but will give in if there is a chance of some relief. Thanks so much

[johnt]

Blackfeather,

I'm nearly 11 years post-diagnosis; on 820mg LEDD. I started picking up major dystonic pain 2 years ago while on long (10km+) walks. During a walk my posture, which is always bad, gets worse; leading to back pain. Levodopa reduces the lean and decreases the pain, but it doesn't go away entirely until I rest.

John

[Niggs]

Originally Posted by Blackfeather

Can sinemet or c/l relieve dystonia symptoms. I am experiencing some major cramping and muscle contractions in my right arm. So far I have resisted taking c/l but will give in if there is a chance of some relief. Thanks so much

Hi Blackfeather,

I have dystonia in the neck and now I'v realised also in the ankles/feet.
I say now realised because I have collapsed arch left foot and excessive abduction/over pronation in both so clearly there's a podiatry issue. But as I'v
increased the LEDD, I'v noticed my feet are better.
I think this is partly due to L.dopa relaxing the muscle/tendon and also the improved gait ie less foot drag = less rolling of the ankle = less tendon trauma.

Both the neck and feet have been problem areas since childhood.

One thing I have noticed is at low dopa times occaisionally and when I'v titrated down always, dystonia can be so bad at night that for 10-15 min when I get up at 3.00 am that I'm bent double at the waist. This does'nt happen when the meds are stable in either a lower or higher dose. The Requip xl is the main culprit for me.

Please don't take the following as a "what you should do" I'm certainly not giving advice just offering an opinion. There seems to be more and more studies concluding that delaying L.dopa in favour of Agonists has no advantage and that we might as well have the good stuff from day 1. The term Levodopa phobia is used.
How true this is who knows,perhaps see what you're Neuro thinks about tweaking the Agonist. At 7y post dx I'm glad I'v started L.dopa.

It's always smoke and mirrors here in Parkinsonia.

Wishing you well,

Nigel

[Tupelo3]

Originally Posted by Blackfeather

Can sinemet or c/l relieve dystonia symptoms. I am experiencing some major cramping and muscle contractions in my right arm. So far I have resisted taking c/l but will give in if there is a chance of some relief. Thanks so much

Blackfeather, I have dystonia in my left foot. I suffered with it for 4 years before I was diagnosed. Now, if i take just one half (1/2) of one low dose C/L it alleviates the cramping for about 6 hours. So, I would definitely suggest you give it a try.

[pegleg]

Dystonia is a tricky thing. It occurs when you need dopamine, and happens when you get it. That is why I had DBS. I was hoping that they would be able to make adjustments other than with medication so I could avoid the dystonic pain.

And they did! After the second adjustment, my dyskinesia stopped as did the dystonia. Of course I have to keep going back due to little tweaks needed. But it feels so much better.

[RLSmi]

It's great to hear from you directly, Peg; especially so, because you are apparently doing better!
We are all cheering for you!
Robert

QUOTE=pegleg;1203191]Dystonia is a tricky thing. It occurs when you need dopamine, and happens when you get it. That is why I had DBS. I was hoping that they would be able to make adjustments other than with medication so I could avoid the dystonic pain.

And they did! After the second adjustment, my dyskinesia stopped as did the dystonia. Of course I have to keep going back due to little tweaks needed. But it feels so much better.[/QUOTE]