Thread: Confused
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Old 08-27-2009, 06:10 PM
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Join Date: Jul 2009
Location: Michigan
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Quote:
Originally Posted by xaxa View Post
I went to Baylor this week, as I have moved to Texas. I've been seeing an MDS at Mayo for several years who diagnosed me with dystonia with secondary Parkinsonism. Said he wasn't sure I had young onset Parkinson's, but in case I did he would wait as long as possible to start levodopa b/o dyskenesias. Then I see Jankovic at Baylor & with total confidence he says I have Parkinson's & recommends Sinemet & that it will make me "almost normal" for about 10 years until the dyskenesias kick in.... I'm so confused! I am 39 & want to enjoy life still...

Thoughts? Please advise!

Xa
Xa,

I understand your confusion. Many of us have been told yes, no, maybe, it's all in your head, you're too young, we'll wait and see, and so on. Two things come to mind:

As much as all of us dread hearing PD, Jankovic is an expert in PD and has published much, much research in his field. He is renowned for identifying subtypes of PD (see page 3 of the Stalevo thread).

Just as there are 2 main subtypes of PD, there are 2 unofficial subtypes of the MDS. Many MDS's will tell you that you must hold off as long as possible from using Sinemet due to dyskinesias and possible waning efficacy. However, from what I've read and heard from other neuros and pharmacists is that the prevailing treatment approach is to provide whatever it takes to optimize the patient's quality of life in the here and now, so some neuros will prescribe Sinemet right away.

The choice is years and it largely depends on how you respond to the medications and how intense your symptoms are.

With the dopamine agonists, which is most likely what doc would prescribe early on, some people cannot handle the side effects which can include compulsions (shopping, gambling, etc.) that damage relationships, finances, etc.

With Levodopa (Sinemet), some people enjoy up to a ten year "honeymoon period" that is dyskinesia free; others experience dyskinesia after only one year. Hard to tell.

Please keep these things in mind when making a decision and closely monitor your response to meds.

Hope this helps a little,

Laura
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