for those with PD and dystonia - may we please have a seperate but attached forum?

ie: http://www.dystonia-parkinsons.org/
what is dystonia:
What is Dystonia?

Dystonia is a neurological muscle disorder that causes uncontrollable, painful spasms in one or more parts of the body. While not widely known, dystonia affects an estimated 500,000 people in North America alone--more than muscular dystrophy, Huntington's disease and Lou Gehrig's disease combined. Different forms of the disease affect the face, neck, throat, eyelids, arms, legs or torso. This devastating disease can appear in children and adults alike.


I have both PD and dystonia - the dystonia is soooooooooooooo much more painful!!! i have it in my chest wall!!
but in terms of stiffening pain and too much motion writhing pain muscles ache horridly

Dear Lou_Lou

So sorry you have this problem! I have a new development going on, maybe someone can tell me if it's dystonia! I'ts this pinched nerve in my lower back/hip, running down my right leg, causing pins-and-needles in my foot. The funny thing is that it is completely LevoCarb responsive, coming on as I come down off the drug every afternoon, and easing off as the Sinemet comes on at first-dose in the morning.

I'm in the 11th year of PD, just LevoCarb: ~600mg/day, (100mg of chewed-up Sinemet CR + a crumb of fast release generic Levo-Carb, every 2 hours or so). ( I can't take more than 600 mg or the dyskensia makes it close to impossible to walk.)

For the past few weeks, the daily pinched-nerve-drug-come-down episode has made it mostly impossible to do anything at all but go to bed, in the evening. I'm doing magnesium, but it hasn't fixed the problem.

I heard somewhere about "dopamine responsive sciatic dystonia" which sounds like it, but turns out to be something else entirely.

Any leads?

Wishing you all the very best

lou-lou - I have dystonia also and am seeing a pain management doctor now who has helped me so much. And Atma - your problem sounds like good ole sciatica. And undoubetedly that is the most painful pain I have ever experienced. All lI can do is go to bed and cry when I move. All dystonia is bad, but sciatica is the worst for me.

The pain management doctor has given me epidurals which help some, but sciatica just has to work its way out. Moist heat helps.

Monday, however, the pain doctor is trying something that I've never tried. He is going to do "several" facet joint blocks in my neck; i.e. directly inject anti-inflammation and numbing medicine into the facet joints of my neck. He says it has been very successful with similar cases.

I have been having these spasms in my neck that are slowly killing me. They feel somewhat like sciatica. My problem is compounded by stenosis of the cervical spine,, and I already have had two operations to fuse C-4 thru C-7. The new problem is arthritic changes around C-7 and T-1. (It must be destroying my entire spine).

I am on heavy narcotics - otherwise, my quality of life would be to be bedfast. My PD causes lots of dyskinesia, which I can live with were it not for the pain.

So Lou-lou and Atma Namaste, I empathize with you both. Since my problem is more arthritis-related and is aggravated by the constant moving of my joints from dyskinesia/dystonia - I don't think DBS would help, and I want my next brain surgery to be a more sure thing. I have taken 3 Comtan, 8 mg daily of Requip, and 5-6 Sinemet 25/100 a day for years. That isn't much for PD meds in my humble opinion.

I will let you know how the new procedure works. Oh, and you might want to talk to Tom Berdine - lou-lou, I think you know him. He has found some relieif with Botox injections. Those muscle spasms bring you down, don't they? (Just thinking about them almost kills me!)

Prayers and positive karma to you both!

Peggy

Reading with interest but I only have the regular old morning foot dystonia, but I am curious as to what kind of dystonia you experience?

Is it focal like just your calf muscle or generalized?

Did any of you present with foot dystonia in arch of foot or toes?

Do any of you recall as a child having any sort of regular cramping or pain in ankles or legs?


Did anyone ever have magnet toes? this is where two toes cramp and then
just cling together like magnets?


In regard to spine, I have read PD and scoliosis....there is a connection. I am having a flashback moment to someone asking me in a clothing design class if I had scoliosis?

Laura
My dystonia crops up everywhere, and as quickly as it comes, it leaves. It started in my shoulder - thought I had a torn rotator cuff. Finally got injections (?cortisone) and it left. Then my lower back (had two MRI's which show "arthritic changes" (which equates to A-G-E! My knuckles are big and doctor ays "arthritis."

So my source of pain is mostly arthritic changes (my mom is almost bent double). My Parkinson's dyskinesia (I lost 50 lbs when it first got bad) kept the joints inflammed by coonstant movement. Then dystonia started. It's difficult to describe - not a cramp, but like your arm, neck wherever it hits is going to twist into a broken bone. After two cervical fusions, I decided to go with pain management.

I do recall my legs cramping as a child, and I grew tall (5'8") between age 10-12. Now I'm bent to 5'7" and have one hip 4" higher than the other (?maybe from my PD gait).

I am at the mercy of this incredibly horrible pain, and I cant relate it to my PD meds at all (I only take 6-7 25/100 Sinemet aa day). Going to Birmingham, AL to see if they can figure something out.

Hi Laura,
I have foot dystonia, but not all the time, often as wearing off or on issue, in toes and outside edge of foot. Also an inner dystonia mostly in a.m. that is extremely painful, visibly so to anyone with me at the time. I also have lower back dystonia, very like sciatica, that affects my right leg when I wear off.

So yes to foot dystonia, and occasionally what you call magnet toes, which are very painful and crampy.

Yes also to childhood cramping in lower legs and feet, bad enough for my mother to get me to the doctors, where is was called 'growing pains'. They were a daily occurrence for me till about 8 years old, and then disappeared.
My daughter also had these leg pains, too. They were not twinges, they were full blown pain.

Scoliosis at it's worst is quite rare in PD, I remember researching it for an acupuncturist friend who had a client with it - her forward lean did not allow her to lift her head, walking was very difficult. PD meds did nothing for it - sadly neither did acupuncture...

Atma-
As was pointed out you are describing sciatica. This is usually caused by disc degeneration leading to the pinching of a nerve where it leaves the spine. But there is another form that my wife did battle with a few years ago called "piriformis syndrome". The piriformis is a muscle at the top of the hip and the sciatic nerve runs alongside it.

In some folks, however, the nerve passes THROUGH the muscle. When that muscle cramps up for any reason, and I am thinking meds here, the pain can be just as bad as the standard version.

I don't know if that is much help or not, but it may be a lead. Hers was finally dealt with by a massage therapist and some serious stretching and has not returned.

I had ricketts as a child and briefly wore braces until the cod liver oil took effect. But for years afterward I would have end of day pain in the long bones of my thighs that were soothed by rubbing alcohol.

As a maddening aside, I seem to have found a cure for dystonia but I can't figure out what it is. Specifically, my cramping of my left leg and curly toes on both feet disappeared about a week ago.

My best guess is that it resulted from my increased use of propranolol, an adrenal beta-blocker, which officially I am taking for hypertension but which has a multitude of other effects such as anxiety relief. It might be worth exploring. Wikipedia has a good writeup on it.

Thanks Peg and Lindy,

Did either of you have foot dystonia on your affected side very early on?

Also, is it normal for PD dystonia to spread? I started with just cramping in my right foot and toes now it sometimes spreads to calf - this is in the morning. At night, my whole leg sometime spasms and the pain is breath-taking because my calf will spasm in one direction and quadricep in the other direction, so any effort to release one spasm only sets off the other one in intensity. This is a fairly new development. Does this sound normal? I am a little freaked out by it.

Laura