Dystonia...advice needed
 

When your dystonia began, how did it feel to you. This is a personal question.

I am trying to figure out if my right forearm muscles and my right leg muscles are screaming at me because of fatigue of my ever worsening tremor, or if it is newly encroaching dystonia.

My "off" score this morning on the UPDRS was 55. My "on" score was 28. The reason it was so high "off" was due primarily to my tremor which is getting really bad and the reason I had been considering early DBS.

Thanks,

need to know, too
 

Carolyn,

Muscles in my right thigh have been tight and painful all evening. Definitely NOT neuropathic pain - that i know all too well. I'm thinking dystonia. I'd say it's beginning pretty much this evening - tight tight muscles - aching.

Dystonia can be very unpredictable. I can get dystonia in certain muscles during Sinemet peak-dose, that I don't get during "offs".

Last evening we went for a walk around the neighborhood and suddenly my left foot started cramping and my knee turning outwards, so that I could hardly walk. This was prior to dinner, I was maxed out on levadopa, and the only thing I had eaten an hour earlier was a banana.

You would think this to be an optimal condition to do some light exercise. You would think the potasium in the banana would be good for your muscles ... well, PD does not submit to the logic of a healthy metabolism and it just might have been too much, who knows?

dystonia -
 

my dystonia is usually brought on by stress, and worry and lowblood sugar,
leva dopa carbi dopa / aka sinemet, not enough, too much is dyskenesias-
the wiggles, were it is hard to stay still, the PD ballet

I have two strengths of sinemet-the ones you can chew and the sinemet cr.
also I take magenium in a capsule 500mg. magnesium helps relax the muscles,
and B-complex with C, focus on someone or someplace you love.
I have noticed in many PD patients [especially women ]-
we hold our breath -so I lay stomach flat on the floor, which forces me
to take deeper breaths, or possibly I have been told by my friend who is a paramedic - dystonia causes hyperventilation, panic attacks follow the acute -horrible pain, for me. they will give you oxygen if you go to the hospital, and a benzodiazepine -
dystonia worsens your tremor or possibly a freeze -glance around the room
if standing, - the best thing to do that I know is to
think of peaceful things, and pray.

sometimes a glass of wine will help me.

no studies to back this up
 

But I have had surprisingly good results when my left foot wants a life of its own. I silently convey a sense of love and acceptance toward it. Been working like a charm.

Dystonia
 

I always use my walker when I take my dog for a walk. I try to focus on the basic Pilates for of pulling in all by stomach muscles towards my back, and breathing laterally. Sometimes something will distract me, and I find myself bent over and running in tiny little steps. I stop and try again. I am trying to train my brain to automatically correct my posture by doing this twice a day.

I also received a tri-cycle from my husband for mother's day. I am haveing a great deal of difficulty steering it and am constantly crashing into curbs or ending up in the middle of the road instead of on the side. It has been two weeks and I am still having the same problems. I don't know if my brain is having trouble processing spacial concepts or I am just inept. Have to lose weight as my last fasting blood test showed I was pre-diabetic and high cholesterol. Carolyn, it its any help, DBS worked well for me. I was able to cut way back on drugs and don't have to suffer on on's and off's I once did.
But there is a downside. You can never have an MRI to look at soft tissue to find out the cause of pain. I put on alot of weight. Since you have diabetes, you might want to check into if any research has been done strictly for those patients who had DBS and Prior to DBS, diabetes.

Sincerely,
Vicky

I don't like to use the word but...:)

But, when you initially began having dystonia...when it began manifesting itself...was it sudden or a gradual "feeling." Is gradual how did it feel...achy and tense muscle...charlie horse feeling...that is what I am asking.

Thanks,

Ok, Carolyn, the very first symptons of dystonia began with a stiff neck. I stopped wearing blazers and coats with high collars because I always ended up with neck pain. Go figure. Then came constant back pain - always muscular pain, mind you.
Then one day I realized that my left hand had lost some movement and my left arm was stiffer.
But the very first thing that I think could have been an initial sign of PD-related dystonia was that one day (I was not 30 years old yet) I suddenly couldn't breath right. I was unable to fill my lungs, as if my chest muscles weren't working properly. My GP sent me to a heart specialist and he found nothing wrong, but said it could be stress related.

Dystonia, as you know, is a sustained, involuntary contraction of one or more muscles - any muscles or all of them. Stiff parkies suffer badly from dystonia, tremor dominant parkies not as much.

Thanks tere, this is what I wanted to know.

I will keep an eye on what is happening. I am stiffer than ever before and it could just be that and when it is combined with really bad tremor, the result is pain. Like my muscles are getting two different signals at the same time...stiff and tremor...what a battle.

I had a on/off evaluation yesterday and my "off" score was on the UPDRS was 55. My "on" score was 28.

Thanks,

Mine started in my neck on my right side (PD affected side) and goes down to in between my shoulder blades. It started pretty gradually. Sometimes it's just a constant ache, while other days it truly hurts like hell. Like someone is just twisting my muscles in a knot - and laughing at me while they do it. PD can be a bully sometimes. Lately, over the past year, I've noticed that it "moves around" a bit - sometimes going lower into my back and even on my left side as well. I'm not tremor-dominant, so I guess I get to enjoy more of the dystonia. Ugh...