In the past week I have been having painful dystonia in my leg, It causes me a lot of discomfort and I can't keep still, it twists my foot and pulls my body forward. I have called my MDS but have not yet been able to talk with her or make an appointment. I have just stopped the medication Luvox (fluvoxlamine) a week ago because it was giving me side effects, I had only been taking it for a month and was having difficulty breathing and some involuntary movement. My question is for those of you who suffer from dystonia as a symptom of P.D. What have you tried that has given you some relief? I am presently taking Levodopa/Carbidopa 100mg/25mg 4 times a day, requip 3 mgs 4 times a day. Up until this past couple of weeks it seemed to take care of my Parkinson's symptoms although it was wearing off after about 3 1/2 hrs. I have tried massage and it did seem to help but only temporarily. A few hours after the massage it returned with a vengeance.

Evon,

This sounds like you're in need of a medication adjustment. The dystonia is really painful. You do have my sympathies. The only thing that helped me was the massage, and then that didn't do much for me either because once the pain subsided my foot would feel like it wanted to spasm again and with vengeance.

The increase in Sinemet has helped me more than the Mirapex I was taking at the same time, and I have since discontinued.

John

how does your dystonia manifest itself, how many times a day, for what duration, and when in relation to your meds.

or is it random and different from day to day.

No answers, just that I have started to suffer from Dystonia too and I am wondering if there is a typical profile for "early onset attacks".

Neil.

Hello, I have the same problem and found relief from baclofen. I take 10 mg three times a day, and it's a godsend. Hope you find relief!

Dystonia was one of my first symptoms before I was dxs 4 years ago. The meds seemed to be taking care of it until recently. The past week has been very bad with frequent episodes throughout the day which last about an hour or more. I've been taking my meds more frequently but it is getting unmanageable. I am hoping to talk with my Dr. tomorrow, its amazing how it has become so severe so quickly which is why I am wondering if it was brought on by the sudden med change. (discontinuing the Luvox)

The genetic form of Parkin is different from Young onset PD. The primary symptom is dystonia rather than tremors. 50% of Young onset patients test positive for at least one parkin mutation. You may want to consider contacting Athenea Diagnostics to inquire about the possibility of if you have a gene mutation. Also with genetic mutations, lewey bodies are not a problem, however iron deposits in inappropriate parts of the brain are. Also, in idiopathic Parkinsonism, loss of smell for some reason is an early sign. This is not true for genetic linked PD. Also the gene form causes more damage in the part of the subthalimus that effects emotions, therefore Parkin mutations cause more depression, paranoid feelings, anxiety and panick attacks.

They are currently recruiting patients for NINDS Gene Project. You could go that route to hopefully have a free genetic test, but you will have to sign away your right to know the results of the test. I had a private one done prior to becoming a part of a genetic study so I know my results. Knowing the results gives me an edge on knowing the best decisions to live the best quality life I am able. I read several studies that said DBS stimulation was particularly helpful to those with dystonia. Another sign is an acute sensitivity to levadopa therapy for those with mutations in their Parkin gene.

If you are unsure of your diagnosis you may want to insist on an FDOPA PET Scan at Mount Zion in New York or Los Angeles University in California. Both of these university hospitals have excellant reputations for reading the results accurately. Even Movement Disorder Physicians are not very forthcoming with these options. Some Physicians still hold to the old bioethic that unless the test will change the treatment of the patient, the test is unnecisary. The peace of mind of the patient by confirming the diagnosis is considered inconsequential.

Best of luck,
Vicky

first thing in the morning, before or just after first meds and lasts 10 mins approx.

It then goes and it is unusual for it to reappear for the day.

I am on similar meds to you, Stalevo 100 x 3 and Mirapex.

I always thought it was the dopamine agonist which fended off dystonia, rather than the l-dopa, seems like I was wrong. Will follow this thread with interest for any tips.

Take care,
Neil.