Parkinson's Disease Tulip


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Old 01-02-2014, 12:11 PM #1
rsprin2 rsprin2 is offline
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Default Dyskinesia

Hello Im a 42 year old male, diagnosed in 2011. My mds has tried me on a lot of different agonists, Mirapex, requip, the patch, and none have really worked out for me. My symptoms have steadily progressed, and fairly quickly I think. Im currently taking 2 25/100 sinemet every 3 hours, 8 mg of requip, 1mg azilect daily. In the past month Im beginning to notice, especially while standing my body fidgeting, rocking back and forth. Is this the onset of dyskinesia? Not sure if this is the disease, or medication. Done some research on this, from what Im seeing seems a little early for dyskinesia but I don't know. Thanks
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Old 01-02-2014, 03:58 PM #2
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Strictly patient opinion here. IMHO and all that...
Dx'd 2000 at age 39. Currently am age 60 and some change.
Have been through the mill, so to speak and will offer the following-

Stay away from agonists. I was taking Requip like it was candy (32 mg/day) at one time and doing well, but it has the potential to be a real bear. I quit it and switched to levo/carbo. It is a nice, civilized old drug offering few surprises. It has few dangerous interactions, so one has either a safety factor or room to experiment as their tastes dictate. And drop any MAO inhibitors - it's risking long term dangers for short term advantage because there IS an interaction problem there.

Something seems odd about your situation. Too much happening too fast. PD is a slow disease. Try to get a second opinion. Failing that, consider the chance that you are, in fact, OVER-medicated rather than under. The line separating those two is surprisingly thin.

Quote:
Originally Posted by rsprin2 View Post
Hello Im a 42 year old male, diagnosed in 2011. My mds has tried me on a lot of different agonists, Mirapex, requip, the patch, and none have really worked out for me. My symptoms have steadily progressed, and fairly quickly I think. Im currently taking 2 25/100 sinemet every 3 hours, 8 mg of requip, 1mg azilect daily. In the past month Im beginning to notice, especially while standing my body fidgeting, rocking back and forth. Is this the onset of dyskinesia? Not sure if this is the disease, or medication. Done some research on this, from what Im seeing seems a little early for dyskinesia but I don't know. Thanks
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 01-02-2014, 04:54 PM #3
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I agree it does seem unusual, I definitely have a good response to carbo/levo, it just doesn't seem to last that long. I have tried to slowly back down a couple times, more out of couriousity than anything, and my symptoms were much worse. I agree with you about the agonists, and as far as the azilect, I have been getting free samples for a year and a half, but that is coming to an end and I cant afford it, so it is going to go away. Have you had dyskinesia, if so how soon, and does it sound familiar with what I was describing. Thank you
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Old 01-03-2014, 12:24 AM #4
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Default I agree with Everett

Sounds like more may be involved than PD. You may have PD-Plus Syndrome.

If the dopamine helps you, consider requesting a Dat scan to give your doctor more information about your illness. You might also consider having a genetic test of you Parkin Gene by Athenea Diagnostics. About 50% of young onset patients have a mutation. I had two. The more information you can learn about your particular symptoms the better you can team up with your neurologist to clarify your diagnosis. After that, you and your doctor can decide on what course of treatment is best for you.

Good Luck,
Vicky
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