Big Bill says of Conductor71:

Boldly she sailed
over the wine-dark sea;
Laurels in her hair
and dolphins leaping.

all i can say is good on you for being persistent and hopefully soon i will be able to welcome you to the "once was diagnosed with pd" club. stay focused and keep track of EVERYTHING! let me know how the daTscan goes. i will be watching

Laura-This is the best news I have read in a long time! I am so hopeful for you!
You are the reason I came to this site. I haven't posted in a long time for many
reasons, but this was such a great message that I had to let you know that I am
thinking of you and praying for you!
While researching, I read that one of the DDS management procedures was to decrease L-dopa. Is this something they mentioned to you? I hope that you are able to tolerate whatever lies ahead so that you can find a definitive answer! Know that you have a strong support system behind you!

Take care!
Cynthia

Also wanted to say good luck to RLMSI - thinking of you too! 😊

Cynthia,

What a nice message! Thank you. I vacillate between cautious optimism and telling myself that I subconsciously downplayed certain symptoms, so they did not have the full picture. I know that the DATscan diagnoses nothing, but at least it may better equip me to accept things anfpursue the right course.

The doctor suggested that I work with my local neuro to very slowly start tapering off meds. That should be a hoot as I cannot imagine his reaction to the letter from the NIH. I do know that I will take my time with it. At least as long in months as it has been years. I was told it would be really difficult and to adopt a hobby or exercise regime; something to focus on other than how lousy I feel. It was also suggested to just take it day by day and try to focused on the larger goal. What makes this even more a challenge is that I am a single mom to a 4 year old boy.

Interestingly, in referring to med addiction, I had a funny thing happen to show how are mind works in keeping us hooked. I forgot to pack my Requip, and I was so focused on logistics and the screening I did not notice for three days. I suffered no adverse effects, and no decline in motor symptoms. In the past, I have had to go without it for a day or two because my pharmacy was out of stock, and I would monitor the clock anticipating some sort of negative reaction, so sure enough a few hours past my dose time my brain and body would oblige with a deep off period. When I was blissfully unaware, I was fine. At first I wanted to discount the DDS when they said you think that you need more and more meds to feel normal I thought no way it is because of drug tolerance; what I think has nothing to do with it. Well, the Requip story shows just how important psychological dependence is.

As for other aspects of DDS; fortunately I had a short run in with compulsive purchases and binge eating (the eating was way out of character for me), so my life was not upended. The escalated dosing; the doctors believe actually make me think that I am worse off than I really am with my symptoms and doctors
then just feed into it by adding on more meds so it all becomes a vicious cycle.

So, I am happy to report that I am now agonist free going on five days now. I will start tapering down Amantadine, and use the Comtan to counter lowering levodopa levels. It will be interesting to see how things look.