I have not been able to sleep normally in days now. My main problem is that when I am about to go asleep, I would wake up with a huge jolt. When I am trying to relax and go to sleep, a sudden jolt goes to my left or right leg. it is variable. And when I insist and keep ignoring these jolts and try to go to sleep, I wake up in a state of panic.
I haven't been able to sleep normally in days now.
Is this something some of you had to deal with or am I losing it altogether?

I'm not sure if this will help ? Many jerks, jolts and twitches happen right before we drift off to sleep. I had them and it frightened me until I learned it can be a normal thing as well. I'm not you so have no idea if its that. But maybe if you read about that by searching net under " Body jolts when falling asleep " or " Body jumps when I'm falling to sleep ". Or some other search words. Good Luck and hope it all sorts out for you.

Mouka,

We are not professionals at diagnosing the disease; only living with it. I know the difficulty of not having a definate diagnosis. I have had an F-Dopa scan at Mount Zion in New York, (the DAT scan does not measure how much dopamine is in the brain, just whether the brain is effective in using or uptaking the dopamine properly. Other illnesses such as dopamine responsive dystonia also are illnesses that are caused by lack of dopamine.) I have also had a genetic test that found 2 mutations in my Parkinson gene, have a sister with PD, 8 relatives on my Dad's maternal side with PD.

It took thousands of dollars to discover this. I doubt my treatment would have changed much except for the DBS surgery. I used the results of the tests to prove DBS would be helpful.

Search this site for information but not to diagnose yourself. That's what the movement disorder specialist are trained to do. Good luck in your search of your symptoms and finding the best skilled Specialist to diagnose your specific symptoms.

Vicky

Yes, those are called myoclonic jerks or twitches. They are known to occur in nearly everyone at one time or another when falling asleep. You need to stop focusing on motor symptoms and look at bigger picture. Many different things can look like PD, so you cannot go on motor symptoms alone. Do you have any of these other things going on:

loss of smell
constipation
REM sleep disorder (dreams so vivid that you act them out)

If you don't have any one of those signs, you most likely do not have idiopathic PD, but you may have a secondary form of Parkinsonism.

Here is my answer:

I have a definite decreased sense of smell. But I still can smell stuff.
I am not constipated.
As for sleep disorder. I am guessing I don't have them. At least not when I am able to sleep. Lately I have not been able to relax enough to sleep on my own. So I am trying to cope with sleeping pills.

What is a secondary form of Parkinsonism? How is it different from idiopathic PD?
I know that idiopathic means with no known origin or definite origin. But I have no clue what secondary Parkisonism is.

Two sure signs are:

1. Loss of arm swing.

2. You will need another person with you but close your eyes and if you fall backwards, well that's what gave it away for me. Make sure there's someone around to catch you in case you do fall.

Secondary PD is a form of Parkinsonsim that is related to another primary cause. For example, welding causes a manganese toxicity that looks very much like PD. There are over 50 conditions or disease states that come along with PD motor symptoms. Obviously, insurers aren't going to support being checked for every little thing; hence, we have the handy umbrella of Idiopathic PD. This is my opinion only, but the research shows over and over that PD has many different origins. I don't think you would find much relief in having this diagnosis; it raises more questions than it answers.

Do you have a reference I could peruse to learn more about the 50 conditions that have PD symptoms? Thanks. I appreciate it.

I don't know how you guys normally feel. But I am totally drained. I climbed a few stairs and felt like I was going to pass out.
Is this what I should expect from PD?

Gerry,

No, unfortunately I found the list via Google and thought I had bookmarked it but it got lost in the shuffle. If this sounds implausible, check PubMed by searching for keywords "presenting and parkinson". I see new conditions linked continually. The latest biggie being Gaucher Disease.

Interestingly many of the conditions were once thought to be juvenile congenital disorders and now they are recording more adult onset cases that look like PD. Some of the conditions are even levodopa responsive. HTH

I will do another search for that list and post if I can track it down.

Laura