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

Hi xaxa,
i'm not a doctor, i'm an advanced patient [20 years]and this is how it went with me. i now have to take it every 2 hours.

I would wait to take sinemet, but not for the dyskinesia reason. I waited 10 years from when motor symptoms began and 7 or 8 yrs post diagnosis to start sinemet. I was pretty miserable when I finally went on it, but my neuro was a firm believer in waiting, and believed it would eventually, as he puts it, “turn against you.’

I went on sinemet because eldepryl and mirapex were no longer working. My first neuro knew his medicine but he did not understand requip. He put me on 2 mg to titrate up…2 mg didn’t make a dent in my symptoms, and after calling requip, they said it wasn’t therapeutic till 9 mg [don’t quote me on that number but you can see how insufficient it was.], he still wasn’t convinced. I was also taking permax…ick. Off with chest pain. At that point, I had pd for approx. 10 yrs. The problem was, my neuro had never seen me off.

I had to go thru a hurricane evacuation in that condition. It was torture. Immediately after the storm I went to the neuro 'off' – that was my only choice, didn’t have meds to get on. He put me on sinemet immediately.

So how long you wait is individual…I went too long.

I got dyskinetic right away. So the 3 yr honeymoon may be for early stage pd only. So yes I avoided dyskinesia before sinemet. But my neuro was dead right about it turning against you. Now I don’t feel that much better on than off. The sinemet is causing many cognitive and behavioral difficulties. It causes it’s own set of movement problems including slurred speech, facial problems [as the day goes on I feel worse and my mouth looks like a beak. I can’t pronounce clearly and I feel crazy, panicky, have no appetite and can’t sleep from all the sinemet.

That’s why I would wait. Sinemet – a love/hate relationship. But the love is almost gone. There is just nothing else. I'm 59.

Only an opinion, disclaimer here – I’m not a doctor, I’m one who is living it. So I’ll end with the PD mantra:
Everyone is different.

Best to you,
paula

Resist at every step but don't be overly stubborn. You have to be aware of your own chemistry. As Paula shows, your neuro only thinks he knows.

The meds cause collateral damage that builds up over the years. Some of that could be prevented by taking anti-oxidants and anti-inflammatories. In fact, you should be taking those long before starting meds at all.

Xa,

Your first Neuro like mine was hell bet and determined it wasn't PD. He kept telling me it was focal dystonia (because I play the piano). My primary care doctor even noticed the cogwheeling in my left arm and some tremor, but neuro #1 was convinced it was focal dystonia. I kept getting the dystonia in my feet in the early hours in the morning and when I was very stressed, but he said it was dystonia.

After some convincing I had to do, he let me trial some sinemet, and the difference was like night and day. I was no longer breaking molars from clenching my jaw, my hands uncurled and my dystonia my my feet let up. My left arm unfroze so the arm swing is better; my right side still isn't as good. He didn't say anything and put me on Mirapex in addition to the sinemet. The Mirapex was no bargain and made me very ill. I became narcoleptic on it and fell asleep at my computer during an online class I was taking.

The thing is, I was in my mid 40s when I finally saw the neuro, but I had been off and on symptomatic for years. I blamed it on other things like a low car. It's difficult for me to get out of my 2001 Toyota Celica because it rides quite low to the ground. I had trouble walking and had lots of cramps and stiffness. Heck I was bike riding a lot, had corrective surgery on my right foot, and did a lot of lifting as a computer technician. Finally when the cramps started impacting more an more, and my right hand developed a tremor did I bother seeing my doctor about it.

Anyway after a mixed up report, I ended up at the Lahey Clinic with a new neuro. She had me go off the old medication schedule and started her own. I was put on mostly sinemet 3 times a day with the CR version at night. Eventually Amantadine was added and now Lodosyn along with more sinemet.

Now at this point I can actually get out of my car pretty easily, I can play the piano again, which became very difficult physically and emotionally to do, and I now have days when I feel totally 100% symptom free like I never had the syndrome.

What can I say? Each doctor as Laura says has their own approach to the disease/condition/syndrome, whatever you want to call it. This is designer disease as they say because each individual handles this differently. Unlike the flu bug, or broken bones, or other conditions where a set routine fixes the problem, this condition does not work this way. This is what makes it so difficult and elusive for the medical community to nail down with a cure. Every tine they come up with something that they think works, the condition changes on their test subjects. This moving target makes it difficult to report any final results and come to any set conclusions.

Anyway, before taking what your doctor tells you at face value, discuss these points with him. This I found to be the most important aspect of treatment. I learned the hard way with neuro #1. You need to ask questions, don't be afraid to suggest things, and be upfront and honest. Believe me if something doesn't feel right, tell him. Don't hold it back because you feel foolish. As my nana used to say. "You have a tongue in your head, use it". It doesn't hurt to ask. What's the worse thing that'll happen? An infamous "no" for an answer.

You, as I've discovered and eluded to above, have to be your own advocate. For me the sinemet proved to be the godsend it was supposed to be. Unfortunately for others it does not as Paula pointed out. Perhaps in her case, her neuro waited too long. There are some "new" studies saying that it isn't the sinemet that causes the dyskinesia, but the condition its self as it pogresses. Again do they really know?

John