new to PD forum
 

hello!

i posted a thread that is found under "new posts".... i tried to post to the PD forum initially but i think i had to go the route i did in order to post threads on a specific forum. ANYWAYS, was wondering if any of you can relate to my symptomatology??? i have so many dystonias and also parkinsonism...have only been on botox, until about 6 months ago when i started mirapex...

here's a funny story: i lived in KC for a year and saw a MDS there who, when i described my eyelids as "heavy" and blinking a lot yet i wasn't tired, he said, "sounds like blepharospasm, but i don't know why you'd be having THAT".... i think if he saw me now he'd get it! ;)

xaxa

Welcome xaxa to the community!..I was diagnosed in May 04..Make yourself at home..Glad you found us!

Welcome dear xaxa!
 

http://farm3.static.flickr.com/2339/...9f9135d7_m.jpg

dear xaxa,
the mirapex is a drug that can cause you to have low blood pressure and alot of falling asleep while driving or sitting still...I did not do well at all with Mirapex...
alot of lawsuits on that drug! and they give it to the Restless leg syndrome people too?

lawsuit for defective drug's
http://www.resource4thepeople.com/de...s/mirapex.html
For those diagnosed with Parkinson's disease (a disorder of the central nervous system that affects muscle control), Mirapex is often their physicians' prescription of choice. (As a side note, Parkinson's disease is not fatal; in fact, most Parkinson's disease patients have a life expectancy similar to that of their peers.)

Mirapex treats the symptoms of Parkinson's by assisting the body's dopamine receptors, helping them properly function. However, the side effects of Mirapex make deciding whether its use is "worth it" questionable indeed.

For example, Mirapex has been shown to cause the following adverse effects in patients using the drug: fainting, hallucinations, weight loss, weakness, twitching, insomnia, stomach upset, and drowsiness. It has also been known to cause hypersexuality, overeating, and even compulsive gambling in rare, but documented, cases.

Welcome xaxa I can relate to the dystonia, very uncomfortable. It annoys me when I read information on P.D. that suggests that it isn't painful. At times my dystonia can be very painful. The only thing that I have found that gives me relief is Levodopa/Carbidopa. I'm not sure if it is called that in the U.S. , it may be Sinemet. I live in Canada. When were you dxs.? I haven't considered Botox, do you find it works well?

dear evon
 

dear evon,
dystonia -more painful than childbirth -almost -even tossup?
I have had one horrid event head to toe - and many lower back events when the body tries to rip itself in half, all I can say is breathe -think about something else besides the intensity of the pain - klonopin may help as the dystonia -gives me panic attacks or visa -versa?

relpy to evon
 

hi evon,

the botox helps me significantly with the dystonias i get injected for, except for the cervial dystonia, which i find currently to be my most disabling symptom. did your dystonias start before or after the sinemet?

i was diagnosed 4 years ago with PD but about 9 months later developed blepharospasm, then OMD, then cervical dystonia, and left truncal dystonia...my current "diagnosis" is "primary dystonia with parkinsonism"....i will be 38 in march.

xaxa

Welcome to the forums, xaxa. I too get painful dystonia in my feet and my left hand. The doctor's saying that this isn't painful are full of you know what! The spasms in my feet have gotten so bad that that they've taken my breath away and made me sweat.

Once I started the Sinemet, the dystonia subsided so the spasms are pretty rare now.

I too was put on Mirapex, and it made my nauseas and terribly sleepy. I would check periodically for light leaks, and wake up hours later!

Good luck.

John

xaxa My dystonia started before I was dxs four years ago. Initially it was a twisting and turning in my foot but as time has gone by it has moved to my leg, hip, lower back and arm on my left side. I started Requip when dxs and 18 months later started Levo/Carbo. In the last year it has increased in intensity and my Levo/Carbo has been increased to 6 100/25 a day and often at night if I wake up I will take another one. (which is why I am up right now at 3:30 a.m.) I am 55 and am worried about how bad this can get and how much Levo/Carbo my body will take before I start to have side effects. So much for the golden years.

golden years
 

evon,

sorry to hear about your progression....i have an 18 month old daughter and i too feel cheated at times... i just pray she remains healthy!!

take care,

xaxa

Hei Xaxa-
Welcome to the forum. You must have much stress in your daily life, caring for your young daughter. The stress factor do have great implication on my symptoms .
Hope you can live your life and be o.k. together with your daughter.

Annelise