Just Diagnosed With Parkinson's
 

Hi,
I was having trouble with leg and calf stiffness and some leg weakness. The Dr did some rule out tests and when it was through he told me that it was his gut feeling that I had Parkinson's.

He put me on Carbidopa/ Levodopa 25/100 2 2 times a day. He never told me anything about side effects so I looked them up myself. It says that 80% of the people that take this medication who take the medication experience Chorea movement in the face and and limbs after 1 year. Is this true. There were many other disturbing side effects also. After reading all the side effects, I rather have weak legs than the nightmare effects that I read.

that's absolutely not true. C/L induced involuntary movements occur in 60% of patients eventually, are dose dependent and often mild but included in the statistics but it's usually years after starting the drug and if they occur in the future will occur whether you started taking the drug immediately or waited 5 years.
when l-dopa first was tested i think everyone who took it had involuntary movements but it was so incredibly expensive it was only given to very advanced patients.
l-dopa is a naturally occurring aminio acid that has been in use since around 1970 and is the most widely used drug by parkinson's patients. if C/L caused that much involuntary movements you'd see a lot more people exhibiting those movements just walking down the street in any large city but you don't.

all side affects encountered during a clinical trial have to be listed for a drug. if you read the package insert for C/L, you'll see how many patients experienced which side affects and you'll see that for some side affects those receiving the placebo had the same occurrences as those who received the treatment but they have to be listed.

page 25 gives the % of side affect occurrences in a clinical trial with sinemet over 748 patients, dyskinesias=involuntary movements. no side affect occurred in more than 16% of the patients.
they don't show the occurrences in the control group receiving no sinemet but i assume some of those had side affects from the placebo.
http://www.slideshare.net/Chrysopigi...strategic-plan

any side affects you have will quickly disappear after you stop taking C/L, it has a half life of about 1.5 hrs., so i wouldn't be scared just trying it.

you can check out the website PATIENTSLIKEME and see what side affects patients have on different pd drugs.

http://www.patientslikeme.com/condit...nson-s-disease

i've been taking C/L for at least 6 years, no involuntary movements and no major side affects. take about 800mg/day.

gotta remember l-dopa is a naturally occurring amino acid. if you read the potential side affects of many amino acid supplements you wouldn't take them. kind of exaggerating.

Do most of the members agree with you on this? Sure would be comforting to know. I've been taking for about a month I think and I have had no real problems
from the side effects. Thanks to you I may sleep tonight.
The main problem is the doctor said,"Take these" and never said anything about side effects!

Some drs are just like that,:(

It's always a good idea to learn about any new med, but even though side effects are mentioned they may or may not occur for you, but you will have the knowledge of what to watch for, just in case.

Soccertese is a wise, (albeit sometimes grouchy) longtime member of this board. I would take his information and advice very seriously.

Every drug has side affects. Every pharmacy is required to give a patient a drug information monograph listing for every new drug a patient gets describing what the drug does, side affects, drug and food interactions and go over with you verbally how to take the drug. Didn't this happen? Didn't you get counseling from the pharmacist? I always research any drug before getting a new RX from my doctor filled, there are always choices.

I wish there were better drugs for pd than C/L but i''d be in much worse shape if it didn't exist. It's been around for over 30 years.
It's up to you if you want to take pd drugs, not taking them won't kill you.
"Do most of the members agree with you on this? Sure would be comforting to know."
Not to be rude but just how many similar responses from a bunch of strangers will make you happy?

Is Chorea movement reversible?
Besides I already decided to stick with the meds. The darn pain in my legs during the night leaves me no choice.

But the quality of my life has already improved since I got the disease. Before in order to have a great time I had to go to Disney World or on a cruise. Now all it takes is to be out of pain and I'm having a great time! :D

you'll have a ton of questions about pd as time goes on and the first thing i did after diagnosis, after getting a 2nd opinion, was buy a reference book on parkinson's written by a pd expert, one can't always depend on message boards and medical professionals to be perfect all the time. same with any chronic disease, knowledge is power. a lot of good info and a lot of bad info can be found on health message boards, i certainly would double/triple check anything posted on any board.

i suggest THE PARKINSON'S DISEASE TREATMENT BOOK by AHLSKOG or the following:
http://www.amazon.com/Parkinsons-Tre...+parkinson%27s

the involuntary movements stop quickly, you stop the C/L and they stop.
they are a function of advanced pd and spikes in C/L concentration, healthy test subjects given C/L don't get those movements.

Hey. I'm starting to feel good about this. I feel like I just joined some kind of elite group!

Well to tell you the truth about me, I was a medical laboratory scientist and sometimes that can work against me. In my case the less I know about it might be better than more lol. So I've been staying away from medical info as much as possible. I was diagnosed just about a month now and it took me about 5 or 6 hours to get used to the fact that I have PD. My philosophy is when I wake up in the morning I just go on living. I just deal with the aches and pains and forget about the dx. It's been one month and I haven't studied PD at all. So I decide I might take a peak at the medication and Bingo... I get burned. I start imagining going to the grocery store making all kinds of weird facial expressions with everyone looking at me like I'm from a different planet and start questioning me about whether or not I'm documented or illegal.

Anyway.. one thing that really puzzles me is that in my case all my symptoms are in my legs. They are supers stiff in the morning. They get so weak that I can't make it from one side of the house to the other. Sometimes they ache so bad that I lay down on the bed and I can't lay down because it is too painful.Then I stand up to ease the pain and then that hurts and then I try to lay down again. When I get like that its like torture. I'm a pretty tough guy when it comes to pain but when I can't lay down or stand I feel like a 10 year old kid who wants to call his mom for some sort of comfort.

Here is the mysterious part. I have no tremors at all. I have extremely fine dexterity.Coordination used to be a lot better but its not bad at all.

Did anyone ever hear of a case of PD that involves the legs only with zero tremors on their entire body?

Someone has to do it. Too bad it is us.
 

It is hard to know where to begin. Yes, this site has traditionally been a refuge for the "elite" including at one time a certain Canadian actor starting a new show this week. And there have been a LOT of good people pass through. Some moved on. Some disappeared. Some died. Some still lurk in the shadows. Some have just arrived. Hey! That's you! :D

First, forget the willful ignorance approach. It s dangerous. Your doc's know very little about PD. You have to know more. You have to be your own advocate. And, if you have a background in research, you have an obligation to this community to use it as we work to work out the puzzle. Hint- the dopamine is just the beginning. Maybe ten percent.)

You have an obligation to yourself, too. These are critical years for you. There are opportunities that wont ever come again. And decisions that you will be living with decades frm now.

There is a ton of info in the archives. Learn to use the search function.

Welcome aboard.

Oh, about those legs- some possibilities include (in no particular order) wheat gluten, B vitamins, electrolytes, muscle atrophy.