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Mark5151

Newbie need advice

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Mark5151    0

I just got diagnosed a month ago and only have some tremors in my left arm.  First appt doc prescribed azilect but at this point I have only tried to exercise more, trying to stay positive, taking a few more supplements (cq10, some vitamins) and recently have started taking mucina pruriens (a small amount).  I tend to shy away from prescription meds if possible.  I guess I figure Mp is similar to starting on sinemet.

next appt is in 3 months, getting an MRI and some blood work first to help make sure it's Parkinson's.

any suggestions on my approach?

51 years old, good health other than this new development.

hoping to be able to play tennis and golf many more years!

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otolorin    28

Mark5151,

I believe the most important thing is functioning and your quality of life.If you can function well this way,it should be okay.My MD chose to start me on sinemet,I refused,so he started me on Azilect which helped for only 2mths.I have tried Dopa-agonist,couldn't cope with the side effects,so ,I was switched to sinemet.Currently on sinement and two supplements with exercises,and doing fairly okay.

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otolorin    28

No,I would have but Dr Okun on this forun said there is not enough research to substantiate the efficacy of m.puriens,and that most of his patients eventually switched to Sinemet,after they didn't derive much benefit from mucina puriens.Just like you I have phobia for the side effects of PD meds,especially dyskinesia.But after doing lots of researches,I discovered that it is possible to get dyskinesia from mucina puriens too,and that the dosing of M.puriens is not regulated by FDA.How are you doing with M.puriens? I will talk to my MD about it during my next appoinment.Believe me the best thing that can happen to us is a cure from PD.Heads up to all PWP.

 

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Mark5151    0

I just started taking Mp, but it seems to help some.  I have never tried sinemet.  From everything I read it sounds like mp is a cheaper, natural somewhat equivalent alternative to sinemet.  Yes you might have to experiment with dosage levels (I'm just taking a small amount).  Not sure about dyskinesia, I have read conflicting things on that with mp?

there is some libido effects that mp has as well, which I like.  I am going to switch from pills to powder form soon and give that a try.  I only have twitching in my left arm so at this point I can tolerate it with no drugs so figure use a little mp to make things better and cycle on/off so I don't build up tolerance levels.  Who knows. In sept I see my first neurologist, so far only have one appt with his nurse practitioner.

guess I'll just cope with changes as they happen, maybe things will go really slowly?  Example: left arm only twitching is ok, but if both arms twitch guess meds are needed to function.

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Mark5151    0

I have read at least a hundred reviews of positive things about mp, mostly people cutting back on sinemet by adding mp to the mix.  I'm a software consultant so internet searching is something I'm a little obsessed with.

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otolorin    28

Mark5151,

I guess whatever works for you is good,I will suggest you discuss with your doctor as well.Some MDs would advice,some would not want to discuss about Mucuna p.Maybe the Naturopath doctors would be more supportive.

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my MDS claims that there is a big chance that AZILECT slows the progression of PD, so I never felt any effect from taking AZ but I continue to take it (started in 2010)

about antagonists - I read that if the patient is younger than 60 it is recommended to start from antagonists and only if there are serious side effects or if it impossible to continue increasing the dose - then add levodopa. I was 49 and had no side effects and antagonists save me almost 3 years without levodopa. even now I take half a pill of levo/carbo 250/25 every 4 hours - so it is 2-2.5 pills a day - I think that it is quite good for 7-th year of PD 

one more med that helps me - PK Mertz. I don't feel much difference when I take it orally, but my MDS starts giving it by infusion and it is a big difference - muscles are much more relaxed, less pain

 

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