I can't help but wonder, if I don't respond at all to 300mg/day of Stalevo is it Parkinson's? My next doctor's appointment is next week. I can't help but wonder what his plan is, up the dosage?

Do you have any suggestions on what I should ask my MDS, what tests I should request?

As resistant as I have been to taking medication I was actually excited about trying Stalevo. After three years of these symptoms I could use some relief (I know 3 years is nothing for some of you ). I have been taking Stalevo for 3 months, and for the past week I make sure it lands on an empty stomach and still nothing...

...and what if I don't respond to L-Dopa, all I get from Google is some miserable options. I'm asymmetrical, left side. Cogwheeling, tightness and tremor left arm and leg, tightness being the predominant symptom. (and I'm ****** off, is that a symptom? ... just kidding) No trouble with my eyes or facial muscles.

I'm freaked out and excited all at the same time, it's like playing "Let's Make a Deal", door number one was essential tremor, and two PD, what's behind door number 3? I didn't even want to play this game

Any input or smart a*s comments would be great.

Thanks for being there

Robert

Hi Robert,
It is a tough one getting an accurate PD diagnosis. Is it PD or one of the several other close relatives. One point is the effect of stress, it really accentuates PD symptoms. Do you notice any increase in stressful encounters?
For example, for several years before I was diagnosed officially, if I was driving and someone cut me up, my left side, arm and leg would tremor violently. I could not understand what was going on. But if I knew then all I know now I would have recognised it as a precurser of PD.
Another question, have you lost your sense of smell?
This can predict PD up to 4 years in advance.
Do you walk perfectly, or do you drag one foot slightly, another indicator.
I can only suggest that you are not sufficiently advanced into PD to be receptive to levodopa. When I first took it I noticed no difference, but over the years, I needed it to function properly.
Hope this helps
Ron

Does your tremor disappear when you reach for and grasp something, or does it disappear when at rest? I've observed a PD tremor in a hand at rest going at a fairly slow rate, which I've read is somewhere around 6-7 Hz, unlike an essential tremor where the hand trembles rapidly when trying to do something. Also PD tremor is not affected by alcohol consumption, while essential tremor is.

Having said all that, I have to tell you I am not a doctor, and that there are several hundred ailments that involve a tremor.

Just want to add that I wonder what kind of neurological exam you had. Did you have to try finger-tapping, or rotating your hands in a hands-up position, or patting your hands on your knees, or the like? Do you have trouble with speech or cognition or balance?

How old are you? All "typical" statements such as mine above are not valid for very young onset PD.

We all have fears about what we'll have to deal with. My own preference is to face them down when they come up, and then not to think about them too much, but grieving from time to time if necessary. It helps to believe God is comforting me and will continue to do so, not that I'm pushing that idea on anyone.

And don't borrow trouble by reading up on diseases. Go out and take a stroll in a park or something. This is a day of your life, to be enjoyed.

Best of luck, Robert.

Jaye

• Been on 100mg/day of Stalevo for 3 months
• Sense of smell - gone except for a few things like fresh basil
• Anxiety - multiplies the symptoms ten fold
• I do drag one foot and have no arm swing on the same side
• My tremor does not disappear when reaching for things
• Alcohol does help mellow things out mildly
• I've been diagnosed twice, by two MDS both PD specialists. Lots of finger and toe tapping, drinking a cup of water etc.
• I'm 33 diagnosed at 30, noticed the smell and arm swing a few years prior

Ron, how far into your diagnosis were you when you first took L-Dopa?

What a frustrating disease, a diagnosis tool they refer to as the "Gold Standard" that is only around 60% accurate. Then again, I suppose it's better than nothing at all...

Thank you guys for your response

Robert

I was diagnosed immediately with PD when I walked through the door of my MDS almost 10 years ago. I had no arm swing and a foot drag on the right side (something that I was not aware of) and also a visible tremor in my right hand (something that I was well aware of, and had tried to hide for about 6 years).

I responded positively to agonists for 6 years; I began carbodopa/levodopa just 4 years ago. I am currently taking 2 or 3 sinemet a day plus amantadine for my tremor.

I am 51; I was dx'd at age 41

I was not given sinemet until 6 years after my positive PD dx. Sounds to me like you will respond - I'd give it a try.

I have been on Stalevo 300mg/day for 3 months now.

For some reason, I was not able to figure that out from your post; so - no response in 3 months? But you had a good response to the agonists?

That is one question I have no answer to: does a good response to agonists also mean a positive PD diagnosis? I was not given sinemet for 6 years.

Anybody know?

I had a bad response to an agonist (Requip), long before the therapeutic dosage I began to have auditory and visual hallucinations. I've been on Azilect for almost 2 years. I don't know that I noticed anything other than a slightly better state of mind, and that was after 6-9weeks of taking it.

Thanks again for your responses.

my suggestion is to assume you DO NOT HAVE pd and find the best upper cervical chiro you can as well as myofascial therapy and/or Bowen work. after some work, see if you feel better! if not try pills. good luck! ibby