My assumption as well. I have been having adjustments to my upper cervical, specifically the atlas, now weekly, for a year. I tried myofascial and got a rash all over my body after the first treatment, toxic release. I'll check into Bowen work.

Hi Robert,
I was given sinemet (300mg [per day) immediately I was diagnosed.
However, it had no effect, and I was in denial that I had PD for the first few years. I even had a month without it to prove to the neuro I didn't need it
For the first 5 years after diagnosis, I managed a large chemical factory with 180 employees making highly explosive and inflammable organic peroxides. The factory was surrounded by residential areas. Tell me about stress!!
Eventually the symptoms worsened and I had to admit I had PD.
I have been a slow developer though, and even after 18 years I have booked a holiday in Italy next year, but now I am quite bad when off.
I stay upbeat and try not to complain, I think a positive attitude helps. I think the advice you have had is good, decide to enjoy every day, and as a precaution decide on a few of the best supplements to take, (I like curcumin) to slow down progression in case it is PD.
Ron

Ron
I was diagnosed with PD 1.5 yrs ago with stiffness,right leg limp, loss of some use on right side of body and lethargy. I went the natural route until Sept of this year. I succombed to the day to day horror of Pd and cried uncle. I have been on sinimet for 3 mos and I feel no difference at all in my symptoms.
You too had no initial response to sinimet. You also said something interesting in your initial response.You said that maybe the pd had notprogressed sussiciently to respond to medication. Could you extrapolate on this.
I have been lurking on this board for a year and a half and have been educated, enlightened,uplifted and impressed with the knowledgable individuals on this site. I hope Iam welcome to add my comments also.

Wayne

Hi Wayne,
Welcome to Braintalk,
QUOTE
You also said something interesting in your initial response.You said that maybe the pd had not progressed sufficiently to respond to medication. Could you extrapolate on this.

I feel that unless you are sufficiently advanced into PD, and showing clear typical symptoms, taking levodopa may not have a pronounced effect. Particularly if you are a slow develpoer.
Although levodopa is sometimes given to help diagnose PD, there seems to be a group of us who don't show a beneficial effect early on. Only as symptoms advanced did I notice a difference. We are all different in our response. I have now met quite a few PDers who did not show an early response.
Ron

I was diagnosed with atypical Parkinsonism in November 2006 at 45 years old. I have however responded well to Sinemet, and almost immediately I should add. I was quite surprised myself when I took it as I expected the typical 3-month wait and see if it works, but I felt the results within two days.

My current neurologist said in her last report to my PC-doctor that I am at stage I on the PD scale. This is by the way with a morning dose and the leftovers from the CR at night. I would hate to see what I'm like without medication because when I start to go off, or I am stressed and out of schedule, I feel miserable.

Anyway this is considered a designer disease because each person is different and reacts differerently to their medication levels so you could be one that will take time to achieve the results needed to feel that everything is working for you.

From what I've read, the early-onset cases are very difficult to diagnose because they do not always show the textbook symptoms. For me I have I have rigidity and spasticity and very little tremor in my hands. I do get the shakes when I am upset, nervous or very tired and they didn't go away with Toporal or alcohol. When I walk, my left hand sometimes clenches into as fist and my left foot turns in. My right hand will also pull up to my side, but it usually stays down with little arm swing. I tend to walk with a wide gait and sometimes bend over forward and shuffle when I am extremely stiff. I've also developed a balance problem with a tendancy to fall backwards easily, and have fallen at home, at the supermarket, and at work.

One of the best things not to do is to browse the internet looking for symptoms. Take it from an expert. I had myself dead and buried in months when I first started researching what was happening to me.

John

The stalevo 300 mg a day if I am correct that is either 100 mg of levodopa and 200 of entacapone or it is 150 of the levodopa and the 200 of entacapone. This may not be enough levodopa to get you to respond despite the fact that entacapone is there. It is an extender of the levodopa, a COMT inhibitor. My point is that perhaps you are trying to extend something that itself is too little to begin with. There is an excellent article on this, incorporating agonists, inhibitors and avoiding dyskinesia. I will try to post it as soon as I can get back to it. The thought is giving lower doses of levodopa more frequently and maximizing their duration through the agonists and COMT meds to avoid the deep fluctuations that we often experience. In addition better ways (duodopa in the GI tract) to give the meds. Hope this helps.

Here it is...
http://journal.medscape.com/viewarticle/488542_16

Not all PD patients respond to levodopa. I don't know if they do eventually, or at what point. But non-responders have been proven to have PD by autopsy.

I wonder if you might respond to mucuna pruriens. In clinical trial it was shown to be three times as effective as Sinemet.

it's a new car!!!!

Update:

The doc said my facial expressions seem better?!? He changed the prescription to 1-125mg Stalevo in the morning then 3-100mg throughout the rest of the day (8am 12 4 8pm).

We'll see, hopefully some relief.