Multifocal Dystonia
 

I had posted here about my twitching toe and thumb (it progressed to my face and right hand too). I had lots of bloodwork, EEG neg. and MRI of brain and c-spine neg.

I have been officially diagnosed with Multifocal Dystonia and will be starting Sinemet and if it doesn't help, having Botox injections.

I'm just looking for other patients with the same condition and any experiences you may have had with this medication, so I can know what I'm in for.

Thanks!

Carly

dystonia
 

I am newer to the dystonia diagnosis as well. Baclofen is what my doc put me on for twitching... they called it generalized dystonia, but i don't know if its the same as yours. My has major impact to my walk and my neck... but botox is apparently the last option for me cause its all over me... not happy, I need this fixed :(

My doc wanted to try the Sinemet first to see if my dystonia was "dopa-responsive", some dystonias are and can be managed with medication alone.
I really don't know how the doctor classified mine as 'multifocal' and not 'generalized' because I have twitching in a lot of different places but it did start with my left big toe and left thumb. Then a few times with torticollis. Then progressed to my right bicep and forefinger, face and eye jerking.

The Sinemet seems to be working for my original symptoms, but I'm developing new symptoms now, so I don't know if I need to give the meds more time or if new twitches/spasms are side effects from the medication. I got the approval for the Botox, but the symptoms come and go and affect different muscles so I think it will only help with my neck, because that is the only constant. I had a few episodes of torticollis (turning to the side) but lately, my neck has been pulling backwards, so that I'm looking up at the ceiling.

It's so frustrating and my husband just doesn't understand how frustrating it is not to be in control of your body. I'm super stressed and it's making it worse. The doctor also talked about prescribing some thing like klonipin for the anxiety and I balked at that, but I think I'm going to call her and ask for it now. I hate being on any kind of meds but I can't deal with the stress of this. I'm only 30 and have a 2 year old, so I hope we can come up with plan quickly.

What symptoms are you developing? They may be caused by the Sinemet. Did he put you on a very low dose and gradually increase until your symptoms stopped? If you take too much Sinemet, it will cause dyskinesia (twitching). I know, because my son takes it. Usually, you should be able to reduce the Sinemet until the twitching stops. But if you can't control your symptoms without the twitching, you may have to take another drug to stop the dyskinesia. The first thing to try is always to decrease the Sinemet, though, rather than adding new drugs. You need to consult with your doctor, though. Never try to reduce Sinemet without your doctor's instructions.