Carbo-Levo Is Wearing Off, Pain In Lower Extremities, Mid Chest, And Feels Like He Is Freezing. He Is Not All That Cold To My Touch. | MyParkinsonsTeam

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Carbo-Levo Is Wearing Off, Pain In Lower Extremities, Mid Chest, And Feels Like He Is Freezing. He Is Not All That Cold To My Touch.
A MyParkinsonsTeam Member asked a question 💭

Pat often times wears a sweat shirt and stocking cap to bed when this happens. Extended release carbo Levi at night does seem to help. Is he alone feeling this way?

posted October 18, 2017
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A MyParkinsonsTeam Member

Not at all , I used to sit summer and winter with those wheat bags all over and a blanket and a fan on my face because I started with dystonia in my neck and dyskenesia and feeling freezing cold. Then hopefully, I'd fall asleep until I was on again!

posted October 19, 2017
A MyParkinsonsTeam Member

@A MyParkinsonsTeam Member

Do Pat's aches and pain occur during "off" times or "on" times? I'm wondering if he's experiencing dyskinesia or dystonia. Have you discussed this with Pat's neurologist? It seems like he may need an adjustment to his medications.

There's reason to be encouraged as some exciting new medications are in the pipeline to help with Pat's condition. One, in particular, is a liquid form of CD/LD being developed by NeuroDerm. I'm currently participating in a clinical study and have experienced phenomenal results.

Another promising medication that is undergoing trials is the repurposed drug nilotinib, originally used to fight leukemia. Clinical trials for both of these drugs are being conducted in our area. If you’re interested, contact Premier Research Clinic in Spokane. To learn more about this research go to:

NeuroDerm ND612: https://clinicaltrials.gov/ct2/show/NCT02782481

Nilotinib: https://www.michaeljfox.org/foundation/news-det...

Yesterday I discussed the status of these clinical trials with my neurologist in Spokane. If you’d like more information, please feel free to contact John at (Phone number can only be seen by the question and answer creators).

posted October 19, 2017
A MyParkinsonsTeam Member

We will be out of town. Sounds like a good conference!

posted November 8, 2017
A MyParkinsonsTeam Member

Are you planning to attend the APDA Live Well Tri-Cities conference in Richland on November 17? Dr. Aldred will be one of the presenters. I think you'd be encouraged to hear results of the exciting research that he's directing in Spokane. He will discuss current opportunities to become involved in medical trials. If you're interested in attending, you can register at: https://www.apdaparkinson.org/events/apda-livew...
If you decide to attend, let me know, as I'd like to meet you both.

posted November 8, 2017
A MyParkinsonsTeam Member

Jason is Pat's Dr as well. We will inquire. Most of this is in the evenings, tho it may happen at other times. I think he gets anxious more in the evenings, which probably doesn't help. Thanks for the info!

posted October 20, 2017

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