Taking Parkinson's Medication at Young Age

@nova11723
I get that exact same response from doctors after they look at my list of medications and see only carbidopa-levodopa listed. When I explain that I do not have Parkinson’s, early-onset Parkinson’s, or dystonia, they’re usually surprised.
The neurologist at the Mayo Clinic in Rochester decided to have me try carbidopa-levodopa in 2024 after normal or negative MRIs, EMGs and other nerve tests. I had already tried gabapentin and baclofen to relieve the continuous cramping in my right calf. For some odd reason, carbidopa-levodopa actually relieves the cramping sensation.

@nova11723

Yes, I did have the Deep Brain Stimulation surgery at the Mayo Clinic in Minnesota in 2008. I take 1 carbidopa-levodopa every 4 hours. When I had the implant put in they told me that it was only to stop my dyskinesia back then. My tremors are ONLY in my legs and they had no way to pinpoint where the tremors were coming from but I was very pleased that it DID stop my dyskinesia. Now 18 years later it really doesn't stop my dyskinesia and my neurologist said that my Parkinson's is progressing and could do nothing for my issues to date.

@trseaman0
Sorry to hear that. Mind if I ask how long you have been having trouble? Have you had Deep Brain Stimulation surgery?

@nasbyevan
Um, you don't have Parkinson's?

@trseaman0 Sorry to hear that. Mind I ask how much carbidopa-levodopa where you taking dailyb for the first couple years?

I started taking it in 2024 when I was 30 and I was taking 3 pills twice daily now I'm at 4 pills three times daily and I do not have Parkinson or Early-onset Parkinson's.

They are finding people having parkinsons at younger ages. I've been on carbidopa-levodopa from the age of 31 to now I'm 65. Parkinson's was primarily a disease that effected the elderly. Now that more and more younger people are getting Parkinson's, they are finding out that carbidopa-levodopa causes dyskinesia with very prolonged use. I've been taking carbidopa-levodopa for 34 years and am having a terrible time with dyskinesia.

They are finding people having parkinsons at younger ages. I've been on carbidopa-levodopa from the age of 31 to now I'm 65. Parkinson's was primarily a disease that effected the elderly. Now that more and more younger people are getting Parkinson's, they are finding out that carbidopa-levodopa causes dyskinesia with very prolonged use. I've been taking carbidopa-levodopa for 34 years and am having a terrible time with dyskinesia.

@hopeful33250 @lisalucier
Do you guys know where I could go when I'm at the Mayo Clinic in Rochester to inquire about participating in studys?
Unfortunately nothing about my medical journey is normal, such as the relief I get from carbidopa-levodopa. I would like to use this opportunity to help the Mayo Clinic by participate in studies.