C/L = ZZZZ?

[Beckey]

I've been on Sinemet for about a month. All I can do is sleep! I'm not getting much done. Does this pass?

Incidentally, when I picked up my refill today I found out my copay had zoomed from $1.40 to $38.45. If I had to pay cash, the price would be $1,245!! How do people afford it who have to pay out of pocket?

[Bailey_Texas]

For me the side effects got better as time goes on

this is a price list for generic that are just as good 

my copay is $3.00

goodrx.com/sinemet

[Beckey in reply to Bailey_Texas]

Thanks!

[Hidden]

Has your neurologist been advised ? if not do so right away

what does he say ?

get  a second opinion

probably not PD

could be good news ,could be bad news

sorry

[Beckey in reply to Hidden]

I've talked to her about it. She seems impervious. She is very certain it is PD. How would you go about getting a second opinion you trust?

[park_bear in reply to Beckey]

The Parkinson Association of Northern California Guide to Neurologists And Movement Disorders Specialists, Here: parkinsonsacramento.org/gui...

They list a dozen MDs at UCSF, so if that is your most convenient location you have plenty of options right there, or if you prefer elsewhere try the California Pacific Neuroscience Institute, also in SF.  You can try Googling individual names to see you can get any reviews.  In any case, *anyone* would be better than who you are seeing now. 

Before I started on Sinemet I had been unable to sleep at night and having sleep attacks during the day.  Once I started, the problem resolved **immediately** - as soon as I started was back to sleeping at night and no sleep attacks during the day.

[Beckey in reply to park_bear]

Know anyone you can recommend?

At this point in addition to the daytime sleepiness, my shaking is off the charts. I'm feeling flat-out desperate.

I see Dr. Maya Katz, who came highly recommended and who is involved in some very promising research at UCSF. All the other neuros I've seen just seem plan stumped. They don't think it's necessarily PD but they don't think it's one of the aypticals either, and it's definitely not ET.

[park_bear in reply to Beckey]

Sent you a message.

[hopedope in reply to Beckey]

I've been re-reading replies to your post and wonder if you've called the NPF (national parkinsonfoundation) Helpline.  The 800 number is on their website.  I remember reading that they can recommend doctors so maybe they can help you find one to give a second opinion.  A support group guest speaker told our group that the Helpline is very helpful.  I may call them to find out more about NeuroOpthamologists soon.  They might also be able to help with your fatique somehow.

[Beckey in reply to hopedope]

Thank you!

[swva]

Never seemed to make my sleepy. PD and meds affect everyone differently.

[Peaches]

Hi Becky. How much Sinemet do you take? It makes me sleepy too but after a while you get used to it. My Dr. refers to it as "the triple whammy...1. my meds make me tired. 2. my age makes me tired and 3. The PD also makes me tired.

[oceanflower]

Hi Beckey - I'm kind of envious you get so much sleep - for many of us, being on C/L doesn't necessarily help get us a good sleep! Or are you talking about daytime sleepiness? If so, I can relate. Some days, I feel very sleepy and can't get through my "to-do" list. I blame my PD for that, since I had this symptom before I got my diagnosis. I suppose C/L is listed as a possible culprit for daytime sleepiness, so maybe this is true with you.

In Canada too, it's expensive, for sure. Today I discovered my new company drug plan only picked up half the cost because it is not a "generic" brand. For a small container, they wanted me to pay $200 - which was half the cost! If I went with the generic brand, the plan picks up 95% of it. Now I have to figure out if the generic brand is as effective...if so, I'll switch. Sigh.

All in all, the C/L is truly the most helpful medicine. I hope you'll see its positive effects outweigh the negative ones. Good luck!