Dystonia and Parkinson's Disease (PD) are movement disorders that are closely related. First, both conditions can occur together in certain diseases. People living with PD may experience dystonia as an early symptom or as a complication of treatment. Dopa-responsive dystonia and rapid-onset-dystonia-parkinsonism are hereditary forms of dystonia in which PD is often also present. Other neurodegenerative disorders, such as Wilsons disease, may have both dystonia and PD, in conjunction to other clinical features. Second, dystonia and PD share common treatments. Anticholinergic medications and levodopa may ameliorate both conditions, and DBS is a surgical alternative for both, although the final brain target may vary. Lastly, PD and dystonia are thought to result from dysfunction of the basal ganglia and their output, although the ultimate cause of the disorders is not known. Further research is necessary to determine the various underlying genetic, environmental, or other underlying mechanisms that may play a role in causing these two related disorders.

My dystonia was levodopa responsive, having said that, over time the dystonia got worse regardless of my being medicated, sometimes i felt that it got worse due to overmedication but who knows? All i know is that the worse it got the more meds they wanted me on so i found another way to deal with it. Quite simply, dystonia are muscle spasms albeit prolonged in some cases. It is no wonder to me why i have dystonia since my muscles seem to be in a state of internal/external tremor alot of he time. I have no doubt that it is levodopa responsive for myself but i also know that eventually levodopa fails to work in most cases. All aboard the pain train! Look in back posts, i know ive posted about dystonic pain numerous times over the years and generally got quite a bit of confirming responses if i remember correct.

peace

Brer T

Dystonia is usually diagnosed by a movement disorder neurologist. Proper diagnosis will be contingent on results from a thorough patient history, a careful family history, and complete physical and neurological examinations. Laboratory tests, imaging studies, and even genetic testing may be necessary to reach a diagnosis. Unfortunately, it is common for dystonia to be misdiagnosed or to remain undiagnosed when symptoms are mild. Many physicians are still unfamiliar with the disease. More education is needed to better inform the medical community about the symptoms associated with dystonia, and how to provide proper treatment.(Bachman Strauss Dystonia and Parkinson's Foundation)

There are no standardized
approaches to the treatment of Parkinsons disease pain, but we usually
advocate an interdisciplinary approach, similar to what is currently employed for
other Parkinsons disease symptoms (with the exception that in severe cases we
may add a pain management specialist to interface with the Parkinsons disease
case team). It is important if you have Parkinsons disease and you are
experiencing pain that you immediately report this symptom and the details
regarding this symptom to your doctor. Dont worry about being a pain, as it
has become all too obvious we have been ignoring Parkinsons disease pain in
too many patients for too long! (Ford B. Parkinson disease: Pain in Parkinson disease: the hidden epidemic. Nat
Rev Neurol. 2009 May;5(5):242-3. et al et al et al......)

Brer T

terrapins - I have reported the severe pain to my neurologist and he then scheduled me for that muscle and nerve test for the end of this month but he referred me back to my family doctor to get something for the pain. The Tramadol works okay for the most part but I still have some pain just not as severe. That and the medication doesn't last very long. I am only allowed to take 3 tablets per day but feel I could use more. Neurologist upped my Mirapex for Restless Leg Syndrome but it hasn't helped at all. I don't know if I should call my family doctor back and tell him that Tramadol helps a little but doesn't completely alleviate the pain and doesn't last very long. I don't want to pester him about my issue because at this point until the tests come back he has no idea what he is really treating me for besides just leg pain. Thank you for the information provided as I did not know that Dystonia and PD are actually two different conditions. I thought Dystonia was a symptom of PD.

As I understand it, dystonia is wider than PD, but can be induced by PD. It's just that PD isn't the only thing that can cause it.

Mainly it appears to be caused by the bad dopamine signals to certain muscle groups that keep them in a constant state of contraction, causing stiffness and pain. Thus why Sinemet helps it, because it helps smooth out the dopamine signals by providing more dopamine. But the Sinemet doesn't help forever, unfortunately, for any PD symptom, including dystonia.

I've not been specifically diagnosed as having it. Just PD in general, but if the stiffness and pain are there, I figure that's what itt is: PD induced dystonia.

terrapins,
As I was re-reading your response from 03/15/15 @ 2:37pm I became somewhat more concerned and filled with uncertainty. My concerns are that I don't know if my neurologist is specialized in movement disorders so do I just come out and ask him if he is? I mean I don't want to be misdiagnosed. The neurologist knows that there is a family history dating back to my grandfather but in those days they didn't call it Parkinson's Disease, it was called something else but he had all the symptoms as PWP with PD have. They have NOT done any kind of lab tests or imaging studies but instead have me scheduled for a Nerve and Muscle Test - do these two tests determine if someone has Dystonia because if they don't then I am really confused as to why I am even having to go through those tests. What could they possibly be testing for besides muscle and nerve damage - which means what.....that my Parkinson's has possibly progressed? I've tried to read up on these tests but it's all so much to take in and very confusing. What are they going to do if both the nerve and muscle test come back normal? Is that when they will schedule imaging studies. x-rays, and lab work to see what is causing the pain in my leg? I'm just very confused as to why and what they are looking for by conducting these tests especially if what I could have is actually Dystonia. It's like I'm a guinea pig right now - try one set of tests and see what results we get and if that doesn't work then move onto something else. My main concern right now is what are they hoping to find out by conducting this nerve and muscle test?

Any input would be really appreciated as I am at a loss right now and all I want is for them to conduct the right test the first time so they can begin to treat the symptom. Looking for your wisdom on this one.

skeeterelf, getting a definitive diagnosis will give you some peace of mind. Please list all your symptoms, Including tremor one side or both. Stiffness? Loss of sense of smell? Restless leg? Balance issues? Cog wheel joint movement? Deteriorating hand writing? If you try sinamet and it controls tremors it is highly likely that you have pd. The neurologtist should be doing several physical test. Watch you walk, do you drag one foot or shuffle? Does your arm swing naturally while you walk? touch your nose to see coordination. Pull back shoulders balance test . Open and close hands are you even and consistent rate and equal both sides.
To find out more about your neurodoc google him and read what he says about specializing in PD ands movement disorders. It is my opinion that the average neurodoc is not intuitive enough with the subtleties of pd to manage your treatment. The more you learn about differential diagnosis the better you will be able to judge if the doctor is good enough for you. Don't worry about hurting his feelings. It's your health. Good luck Alex

hisknobs - My symptoms right now that are making me question whether or not I may have dystonia are severe pain in left leg only, restlessness in left leg only during daytime hours, and a feeling of numbness in left foot. The pain radiates from the groin area all they way down my entire leg. I do not suffer from any tremors. stiffness, cog wheel joint issues or problems walking or with balance. That's why I'm thinking I don't have dystonia - but not sure if this nerve and muscle test he is calling for is supposed to help determine if I do or don't have dystonia. He has me go through all the other motions you described during each visit and I do fine with all of those except for my left arm does not swing naturally when I walk. He has me on Mirapex only and most reviews I pull up on this medication show it's used for Restless Leg Syndrome - and I've been on it now for 2 years. It hasn't done anything to help with my slurred speech, difficulty swallowing or chewing and general fatigue. So I'm not sure he's actually treating me for PD or RLS. I have read great reviews about Sinament and wonder if taking that would help with the symptoms I am having. I "Googled" my neurologist and it doesn't show anywhere that he specializes in movement disorders - it just says he is a General Neurologist and it doesn't even list Parkinson's Disease as one of things he specializes in treating. I'm just really at a loss as to what he is looking for with this never and muscle test. He wasn't very informative about why he was doing the test just that they needed to be done. I guess I will do some more online research as to what these tests are suppose to reveal because I am scheduled for the nerve test this coming Monday. Really stressing out right now about all of this.

Skeeterelf Your reply is informative, Your arm doesn't swing properly when you walk, Your leg pain is just on left side, swallowing, slurred speech, is this softening voice or lower volume.? General fatigue makes day to day activities hard to be consistent. Mirapex is a good first med for PD. but you have to watch for compulsive behaviors. It sounds to me that you should request sinamet and see if it helps. This is just my opinion I am not a dr. Most of us have found that neurodocs who specialize in pd and movement disorders are better at deciphering symptoms, diagnosing, and prescribing a custom cocktail to fit your needs. Find a LSVT Lee Silverman Voice Training therapy class near you and this has been shown to help with speech and swallowing issues. Good luck and good health, Alex