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Srvaughn

Untreatable Dyskinesia

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Hi, I am a PWP from the age of 35 to 59 who also has a DBS since 2011 and screws and rods in my back since 2014 from severe spinal stenosis and degenerative disc disease and a pinched nerve. The whole time I have had parkinsons I have been severely sensitive to the Sinemet IR which causes me severe dyskinesia that cause severe movements that twerk my back (surgical area screws and rods) and twist my neck where my wires are positioned and my eyes can closed. I hate being dyskinetic so much that I take "crumbs" of dopamine (half of a sinemet ER every 2 hours) and 2mg patch neupro. so for a long time now I have been having difficulty walking and my parkinsons symptoms are showing when they normally didnt. So I worry that I may be undermedicating myself but I don't know if there is a test to figure out if I am undermedicated or not? Are there patients that only take Sinemet ER?(especially being cut in half? Is that effective? due to severe dykinesia's from regular release Sinemet.) I currently take my 3- 100mg tablets of amantadine that doesnt seem to cut back on the dyskinesia of up to 2 hours to 3 hours a day and I unsucessfully tried Rytary which caused me 5-6 hours of dykinesia a day. I've heard that its not effective to cut the Sinemet ER in half because it alters the effectivness of the drug. What are your thoughts? Also I have anxiety and severe depression that I don't know if is caused by the incorrect levels of dopamine because I tend to see that my anxiety and depression are worst when its near end of dose time. I have heard that 40% of Parkinsonians have depression that is caused from a chemical that is not produced because of parkinsons disease. So they have to put the antidepressant in to give there body that chemical that there body isnt making. So how do you know if you are apart of that 40% and you need to be on an antidepressant or if its just an unbalance of dopamine thats causing the anxiety and depression. I have tried taking effexor for 2 years and paxil for 3 months both unsucessfully. And is dyskinesia a sign of too much dopamine? should we not increase dopamine and take less dopamine and throw in a different kind of drug? should i not be taking a dopamine agonist and use a different classification of drugs? thank you for all your time to help me . anxiously waiting your response.

 

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Great questions.  I would say that your best bet is an experienced movement disorders neurologist.  Also our 18004PDINFO helpline nurses may help you as well.  These are tough questions and hard to address.  Following DBS if dyskinesia is troublesome you can halve either regular or extended release tabs (no problem).  Using smaller and more frequent doses may help.  GPi DBS may be better for dyskinesia compared to STN DBS.  Amantadine may be helpful.  Finally, the Duopa pump could be helpful even after DBS.  Hope that helps....these are broad strokes thoughts....

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Hi Dr Okun

Thank you for your time and help. I know I'm a complicated case and I agree with you I need a experienced neurologist. Would you please be able to help treat me if I become your patient of yours and I come down to see you even though I would be an out of state patient. Me being in New York and you in Florida. 

 

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I am not sure if this is directed at me but I work at the University of Florida in a city called Gainesville.

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Hi Dr Okun

Thank you for your reply.

I have made an appointment to come down and see you and was wondering if I will be required to see you every month or 6 months or yearly? The reason I ask this is because I will not be able to afford to fly down alot in one year. I didn't know if you would still be able to help accomodate my needs of not being able to fly down alot in one year. Do you help guide your patients through patient portal/telemedicine until there next visit with you when you have patients that are out of state? Also what if you need more time with me because I'm a complicated case, is there such a thing as you needing me there a whole week? and im afraid/worried to be off my extended release sinemet for 24 hours before seeing you as stated in your 1st appointment guidelines because I don't know how I will be able to function while being off of my meds (eat, walk, go to the bathroom etc.) May I please ask you what I can expect will happen to my body while off meds for 24 hours? Are there any dangers to this? just so that I can be well aware thank you for all your time and help.

p.s. I do have DBS.  

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We ask new patients to hold meds starting the night before (so around 9-11 at night take your last dose).  We can make a plan that includes local followup.  If you want to see rehab specialists while at UF make sure you call and request PT, OT, Speech.  This is our standard first visit and we will give you recommendations for local followup if you can't travel.  It is common for people not to be able to travel.  Most new patients request PT, OT, Speech and Swallowing as a minimum so they can take recommendations locally.

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