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Old 08-27-2010, 10:16 AM
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
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Quote:
Originally Posted by stevem53 View Post
My neuro is good about giving me samples too..Trouble is, if I were to try azelict for example, and it worked, I would have be able to have access to 52 weeks worth of samples, because the Stalevo alone puts me in the doughnut hole in 9 months without samples inbetween..I have also been on some prostate medication that has also been chewing away at the Part D piggy bank as well..I tried to get assistance from Stalevo for some free meds, but was turned down because I dont meet the total household income criteria

So its a catch 22 no matter what moves I make..I am going to try mucuna again when I wean of one dose of Stalevo, and when my system is stable, and predictable..Im also growing fava beans, and plan to try that out, and see what happens..If it doesnt work, then all Ive wasted is, a few dollars and some of my time

My main problems with Sinemet, is it doesnt last long enough, and I had been having too man failed doses..I think my body was metabolizing too much of it before it is able to reach my brain

Stalevo works 95% of the time, with very few failed doses, and is predictable, at the same 600 mgs per day of Sinemet or Sinemet CR that I had been taking previously..I function well on it after it kicks in,..(Comtan blocks some of the receptors that cause Sinemet to metabolize in the body before it crosses the BBB, hence my theory for few failed doses, and predictability) ..but the problem comes at the end of the day when it wears off..There is a four hour transition period, of wearing off, to unmedicated pd..I cant even lay down untill I get through that wearing off period because Im too uncomfortale to fall asleep..I also have a pretty bad vitamin D deficiency, that Im taking suppliments for..I have no idea what that may, or may not be contributing to this situation..and Im getting all kinds of feedback from the doctors that I see..(neuro, gastro, urologist etc)..Maybe its sleep apnea..Maybe its low vitamin D levels..Maybe I need to take 400 mgs of Amantadine everyday instead of 300 mgs..Maybe my receptors are getting irritated, etc, etc, etc

Im thinking, maybe this is just a simple matter of, this is what Stalevo does to me, and maybe this is the price I have to pay for the quality on time that I benefit from it
wow. tough nut. have you tried
http://forum.parkinson.org/
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