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My story started with a doctor visit about 35 years ago where I was trying to describe what I felt in my legs. "You know, that squirmy tickling feeling we get in our legs when we are in a long car ride and our legs start bugging us and we have to move them?".
I remember looking at me oddly and saying "No, I don't know what that feels like, and that's not normal for most people." I was literally surprised because I thought all along - as far back as I can remember as a kid - that everyone felt those sensations. Turned out... that was definitely not the case!
He started me on Sinimet, which gave me instant relief. It was amazing! I could finally sleep at night and my daytime symptoms were completely gone with this wonder drug.
Unfortunately that only lasted a few years and then my symptoms came back but even worse, and started earlier in the day. I started reading up on things and learned that was called augmentation and that it was time to switch to something else like Mirapex or Ropinerole. I have rotated between those two for almost 3 decades (augmentation starts to set in for one of them, so i switch to the other for a whilte... and then back again when augmentation sets in again).
Restless Limbs is fitting for me because now those agonizing urges to move have traveled up my torso and into my shoulders and arms.
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