ok.. the pain from the muscle cramping finally got hard enough that i am headed to a pain clinic. it has been suggested by a fellow parkie that i may have dystonia. i know nothing about this condition and i am looking for some insight.

questions:

is it a condition seperate or a part of pd?
if seperate, is it created by having pd?
is it progressive?
how is it treated? i have heard by steroids, botox?
do these treatments harbor bad side effects?
could the symptoms thought to be pd actually been dystonia?
how do they dxd dystonia?

any words of wisdom would be helpful, or tips of what i can do to control or lessen the pain. thanks in advance.

What I consider to be dystonia is a muscle that contracts tighter and tighter and won't release. Hurts like hell and decides to let go when it darn well suits itself. Mine shows up in the morning when I first try to walk and twists my feet and stiffens my legs. It is asymmetrical and affects my left leg more than my right even though my PD is dominant on my right. I sort of hobble and skate to my chair, take my meds, and wait. In about 15 minutes the problem dissolves away.

Because this occurs in the early part of my day and when I first get up (whether that be 4 AM or 7 AM) I often suspect that it is related to the surge of chemicals that occurs at that time (e.g. adrenaline, noradrenaline, etc).

But I have another suspect, as well. Dehydration can cause monstrous cramping and, because I use a bedside urinal, I am very much aware of fluid loss and there does seem to be a connection. Dehydration is more than just water loss. It includes problems with electrolytes such as potassium and water soluble B-vitamins. Both those are further depleted by the use of sinemet, as well. You might try those two plus some magnesium just before you would normally expect to develop problems. If it makes *any* change that could be an important clue. Good luck.

Dystonia can be a separate condition or it can be part of PD.
PD meds can help. You can get dystonia when your meds wear off. You can also get dyskinesic dystonia from your meds.

I get dystonic spasms in my feet where my big toes curl up and the other toes curl under. I feel my toes starting to curl when it is time for my next dose of sinemet. Then they curl tighter as the sinemet takes effect (dyskinesic dystonia) and then finally release and are good for a couple hours.

Harley,
there is a specific condition called dopa-responsive dystonia, which can look a bit like PD, is treated with l-dopa but is not progressive. It can, I believe, occur from quite an early age.

In pd the whole thing of dystonia/dyskinesia is confusing....

Lindy

i have had excruciating dystonia in my neck. after all sorts of interventions, i did have a botox injection. it did help me. that was last december, & i have not needed any more.fg

checked into dopa responsive dystonia.. ty lindy. i will mention it at the doc appt tomorrow.

Symptoms
DRD typically presents as a dystonic gait disorder that begins in early childhood. The symptoms of DRD may be similar to those of early-onset generalized dystonia, and begin in the legs. Symptoms may appear minor (such as muscle cramps after exercise) or present later in life in a form that more closely resembles Parkinson�s disease. The features of parkinsonism that may occur include slowness of movements, instability or lack of balance, and, less commonly, tremor of the hands at rest.

Symptoms of DRD are often worse later in the day (this phenomenon is called diurnal fluctuation and may increase with exertion.seems to fit what is going on. the thing that worries me are the side effects of botox which is what my neuros nurse said they use for dystonia..

Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are pre-existing before injection. Swallowing problems may last for several months
Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms including: loss of strength and all-over muscle weakness, double vision, blurred vision and drooping eyelids, hoarseness or change or loss of voice (dysphonia), trouble saying words clearly (dysarthria), loss of bladder control, trouble breathing, trouble swallowing

good grief.. another merry go round

Dystonia is one of the most common movement disorders. It is a major symptom of over 50 diseases or disorders. Dystonia is not then statistically PD. PD is a small % of dystonia cases. What you have could be a myriad of things. I went in for Botox on a muscle spasm in my right hand and was dx with PD and was wrongly dx for 10 years.

I've had Botox for several things including migraines and wrinkles in my younger years. You do need to be careful esp. around the throat area since swallowing, vocal cords, etc can be a biggie to have go wrong. Generally it stays where they put it with some spreading but not huge spreading. I never had any affect away from my head or neck or other trigger point injection sights. To be sure you want to have someone VERY experienced if they are shooting near eyes, neck, mouth etc because of the effects you stated. I've not heard of it migrating to the bladder or other distal areas b/c that's not usually how it operates. It paralyzes muscles in close proximity fairly quickly and then is eliminated by the body. I had no trouble with it and great results in general.

I have heard of more bad results from friends with cosmetic procedures where MORE was used and less experienced docs. Usually neurologists have much more experience and use it for more isolated specific things. I do suggest getting online and checking out all docs to be sure they are board certified in whatever specialty (movement disorder etc) you have and that there are no complaints etc. Usually the state board website for docs has a lot of that info. yahoo and Google too. you often find some interesting comments on bad docs b/c people are motivated to post bad experiences b/c they don't want them repeated.

I had some of my neck muscles injected for migraines and had trouble holding my head up for a while until the other un-injected muscles got their strength built up and did the job. the doc was smart enough not to inject all of the muscles so that I could hold my head up. so there is some trade off but experience makes the difference.

Don't let them call it too soon. Ask ask ask. Best of Luck!

the most painful - of the pd - side effects of meds?
the body gets to rip itself in half , unless you can take medication to knock yourself out?
love and prayers for you dear harley...

Harley, hope my answers above helped. I had dystonia in my neck and upper shoulder (right side) well before I was diagnosed with PD. Some Young Onset get diagnosed with frozen shoulder, before it's finally figured out that they have PD instead. Other people with PD get severe dystonia in their feet, which appears to be the most common form, especially in the Young Onset community. There are some that get dystonia as a result of taking dopamine, but those numbers seem small.

How do you help it? Lots of stretching when you're not dealing with dystonia. Diet changes to insure your body is getting the proper nutrients it needs. (A simple blood workup can help with this.) Adjust medications, muscle relaxers work for some, or if really severe, Apokyn or botox. Sadly, everyone is different in what works and what doesn't. Good luck!

Actually, dystonia and dyskinesia are fairly simple. From the NPF site:

Dystonia - involuntary spasms of muscle contraction, which cause abnormal movements and postures.

Dyskinesia - abnormal, involuntary body movements that can appear as jerking, fidgeting, twisting, and turning movements; frequently induced by medications taken by Parkinson patients. Dystonia, athetosis, and chorea are forms of dyskinesias.

My take:

Dystonia is essentially a severe muscle cramp as either a precursor to PD (especially in the Young Onset community), or part of the progression, and sometimes a result of medication, but that percentage is small.

Dyskinesia is essentially involuntary movements, like you see in MJF, which is caused typically by the medications, not the disease itself.

Hope this helped!

That's our musculature getting "out of synchronicity" At the celluar level it's the protien system actin-myosin "normal" muscle synchronicity. We literally tear up our bodies muscular mechanism where the brain just can't talk to get the muscle fibers to slide over each other in a concerted way the way normal people can't imagine. It can cause any muscle pair in any part of the body to bring about negative skeletal-muscle-tendon changes. That's why so many of us look pushed and pulled in the face (our parkie "mask"). Dystonia presents to a neurologist as "heavy as lead" arms and "cogwheeling"; patients are often confined to a wheelchair by spinal disorders, caused by, you got it. Year and years of dystonic musculature leaves us with an ever progressive, ever more debilitated state. So bite the bullet, and take drugs that you know works to minimize the "attack events" where we never want to be seen in public undergoing. Some PWP have a chronic nerve damage, often a lifetime "pain in the neck, or an inability to walk for periods caused by bone-nerve-joint misinteractions. For god's sake, figger it out already, find some neurons that will re-establish the sometimes feet long nerve to nerve cell to musculature synchroic communication pathways OPEN SESAME.