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Good report from my Nero today!


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#1 old+slow

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Posted 11 June 2014 - 02:44 PM

 Just got back from my Nero appointment and he is very pleased with my progress. He's upping my Sinemet to 2 pills per dose. He said the cramps in my leg and foot is Dystonia, and is going to give me something to help with that. He told me what, but I forgot the name of it.He wants me back in 2 weeks, and will address it at that time. He noticed that my Rt foot is starting to point outwards. I hadn't even noticed it myself. And my motor functions are very decreased on my Rt side. That part I already knew. Being Rt handed, I sometimes find it hard to grasp and hold my coffee mug. However at one point early on, my tremors were so bad I couldn't even use my Rt hand.

The Sinemet has just about stopped the tremors, and I'm so thankful for that. So all in all I had a very good visit. I feel very fortunate to have good relationship with my Nero. I read so many post where people don't. Mine listens to me, answers my questions, and does not hurry me out. I think that's becoming rare these days.

Another thing I like is that he also listens and talks with my wife. She sees and picks up on things that I don't. He thinks having her with me at my appointments is a help. So that's it for now my friends. I'll keep you all posted over the next few weeks.

Vic 


So what were we talking about?


#2 Gardener

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Posted 11 June 2014 - 05:59 PM

It's great to hear good news.  How long have you been diagnosed?


Gardener, female, 58, diagnosed at 55, 650 mg of Sinemet daily.


#3 MrFritz

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Posted 11 June 2014 - 06:22 PM

Good news? I'm glad that Vic is feeling better. But do you really think that increasing dosages of Sinemet is a positive thing? All of our drugs have significant serious side-effects. That's one of the reasons why I'm hooked on Ursodiol for life.

Fred

#4 old+slow

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Posted 11 June 2014 - 06:56 PM

It's great to hear good news.  How long have you been diagnosed?

 

Just about a year now.


So what were we talking about?


#5 old+slow

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Posted 11 June 2014 - 07:03 PM

Good news? I'm glad that Vic is feeling better. But do you really think that increasing dosages of Sinemet is a positive thing? All of our drugs have significant serious side-effects. That's one of the reasons why I'm hooked on Ursodiol for life.

Fred

I asked myself the same question Fred, but he has been spot on with my med's so far and I trust him to keep me in check.


So what were we talking about?


#6 Rogerstar1

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Posted 11 June 2014 - 08:27 PM

Please clarify specifically your negative reactions to Sinemet,  Mine have been uniformly positive, unless I take to much...something I control.



#7 MrFritz

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Posted 11 June 2014 - 08:43 PM

Hi Vic & Roger,

 

Sorry. I didn't mean to upset anyone. But just today, my Neuro cautioned me about the long term effects of Sinemet. It is true that we have very little choice in the mater since it is a necessary drug to control our tremors. But it should be kept to the lowest possible dosages that we can live with.

 

See: https://www.google.c.....0.MLjfsQuNWF0

 

"While Sinemet is the most effective medication and has the least short-term side effects, it is associated with high risks of long-term side effects, such as involuntary movements (dyskinesia). Used on a long-term basis, levodopa may also cause restlessness, confusion, or abnormal movements."



#8 Rogerstar1

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Posted 11 June 2014 - 09:11 PM

Hi Vic & Roger,

 

Sorry. I didn't mean to upset anyone. But just today, my Neuro cautioned me about the long term effects of Sinemet. It is true that we have very little choice in the mater since it is a necessary drug to control our tremors. But it should be kept to the lowest possible dosages that we can live with.

 

See: https://www.google.c.....0.MLjfsQuNWF0

 

"While Sinemet is the most effective medication and has the least short-term side effects, it is associated with high risks of long-term side effects, such as involuntary movements (dyskinesia). Used on a long-term basis, levodopa may also cause restlessness, confusion, or abnormal movements."

No 'upset' here but my well regulated use of Sinemet has provided me nothing but relief.  Not even yellow stained teeth as I've read some users complain about - I swallow them whole and recall days when 20 doses of 25/100 didn't get me to the commode in time.   Over nearly 18 years I have yet to hear about a credible  negative reaction to Sinemet.   (Save for a few who reacted negatively from their first tablet - an immunity I suspect).      R.


Edited by Rogerstar1, 11 June 2014 - 09:20 PM.


#9 New normal

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Posted 11 June 2014 - 11:29 PM

Every time you post your confidence in l dopa it lessons my stress, Roger. I know I will need an increase soon and am reluctant...actually quite apprehensive about adding more meds.

I have thought I have had dystonia...but, per usual, I denied it. Until one evening, I was lying on my stomach and asleep, when iI had an abrupt muscle spasm that caused me to do a back bend..literally lifted me off the bed and hurt so bad, I screamed out and awoke my husband. He inquired if I was ok, and I replied, "I think, my friend, that I just experienced dystonia ." Did I? Or wd that be dyskinesia? ...or just a fluke?

As my meds wear off..about 4 hours..I start having a halting gait..robot type...is THAT dystonia or dyskinesia? Halting speech is coming more so also. And the BIG question...do you think I wd develop this puppet like action...and muscle movement spasms out of the blue....even if I had never taken l dopa? Or is it what people speak of as a reaction from L dopa? Now, I notice the phrase, "long use of l dopa" associated with the dystonia. I hv only used it since August.

(Don't mean to hijack the thread...this topic is always on my mind...)

Looking for a response from friend Fred as well....
Dx'd 6/13. Age: 67 mono therapy carbidopa/l dopa 50/200 4x daily
Normal DaT scan, normal MRI

#10 old+slow

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Posted 12 June 2014 - 10:17 AM

The only problem I had with the Sinemet was in the very beginning It was causing some nausea . From what I understand that is unuasual in most people who take it? I know they say to take it 1hr before eating or 2hrs after. Sometimes that's easier said than done.


So what were we talking about?


#11 Rogerstar1

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Posted 12 June 2014 - 10:31 AM

Every time you post your confidence in l dopa it lessons my stress, Roger. I know I will need an increase soon and am reluctant...actually quite apprehensive about adding more meds.

I have thought I have had dystonia...but, per usual, I denied it. Until one evening, I was lying on my stomach and asleep, when iI had an abrupt muscle spasm that caused me to do a back bend..literally lifted me off the bed and hurt so bad, I screamed out and awoke my husband. He inquired if I was ok, and I replied, "I think, my friend, that I just experienced dystonia ." Did I? Or wd that be dyskinesia? ...or just a fluke?

As my meds wear off..about 4 hours..I start having a halting gait..robot type...is THAT dystonia or dyskinesia? Halting speech is coming more so also. And the BIG question...do you think I wd develop this puppet like action...and muscle movement spasms out of the blue....even if I had never taken l dopa? Or is it what people speak of as a reaction from L dopa? Now, I notice the phrase, "long use of l dopa" associated with the dystonia. I hv only used it since August.

(Don't mean to hijack the thread...this topic is always on my mind...)

Looking for a response from friend Fred as well....

Halting gait is what I call early stage bradykinesia (sp?) which is or may be a precurser to freezing.  I know that when inadequately medicated I frequently will take one or more up to five baby steps before I really get going at full stride.  Funny thing is I can hop-a-long sideways much easier than normal walking straight ahead when 'off' like this.  A neurologist once asked me to demonstrate this peculiarity (ability, inability.....or coping capacity?) to his medical school class.  Post dbs it's not as bad as it had gotten to be but I can detect its return.   And no, dystonia comes and stays for a few months,,,mine is never like a flash and momentary spasm of pain.  With luck any dystonia will be l-dopa responsive to some degree and for a while. 

 

regards,  Roger


Edited by Rogerstar1, 12 June 2014 - 11:26 AM.


#12 MrFritz

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Posted 12 June 2014 - 11:23 AM

To all,

 

What I said was based only on what I have read on this forum, been told by my Neuro and what I have read elsewhere rather than on my personal experience. Therefore, I can not add to this discussion since I don't have your issues and we're all different. With the assumption that there are long term issues with taking Sinemet, my point was that maybe one should consider alternatives as I did.

 

Fred



#13 old+slow

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Posted 12 June 2014 - 02:04 PM

Fred,

I value everyones opinion and input and as Roger said, no upset here at all. I've been doing a lot of research and have found no long term studies that show any ill effects to long term use of Sinemet other than the normal side effects associated with most PD med's. If fact most doctors claim the least side effects with Sinemet.

Now with that said, most every drug/med can have different effects on different people. At my age and given my other health problems, I try not to over think and just take it a day at a time.

 

What works for me doesn't mean it's for everyone, and my opinion is strictly that.....just my personal opinion. So far I've had very good results using Sinemet, but yes I do get a few side effects. I've learned to deal with them because the good outweighs the bad at this point for me.


So what were we talking about?


#14 Annikin

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Posted 12 June 2014 - 05:46 PM

Well looks like I have graduated to Sinemet now too- after 9months doing great on Requip , I started having the same cough issue I had with Mirapex. Gotta say except for that first dose on Tuesday making me sick -really sick, I feel better.  Now any advice on its timing? I am on 25 100  3 times per day. 



#15 New normal

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Posted 12 June 2014 - 07:07 PM

Thanks to all for yr responses.
Dx'd 6/13. Age: 67 mono therapy carbidopa/l dopa 50/200 4x daily
Normal DaT scan, normal MRI

#16 old+slow

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Posted 12 June 2014 - 07:12 PM

Well looks like I have graduated to Sinemet now too- after 9months doing great on Requip , I started having the same cough issue I had with Mirapex. Gotta say except for that first dose on Tuesday making me sick -really sick, I feel better.  Now any advice on its timing? I am on 25 100  3 times per day. 

Timing will usually differ from person to person depending on the amount needed. I take mine at 7am, 1pm and 8pm  I may need to add an extra dose at some point to get me through the nights, but I also take sleep aids and so far so good.


So what were we talking about?


#17 Rogerstar1

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Posted 12 June 2014 - 08:52 PM

Taking Sinemet by the half pill with lots of water and on an empty stomach provides the biggest bang for the buck.  IMO. 



#18 johnnys

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Posted 12 June 2014 - 08:53 PM

I have heard rumors that sinemet might cause the brain to stop making dopamine on its own.This rumor has been around along time with regard to anti depressants and serotonian.I don,t know if there is any truth to it .

A doctor once explained the reason why we take more sinemet is we lose more of our brain cells that convert sinemet to dopamine. I  respond well but the effect is growing shorter somewhat.

The same doctor also told me that while drugs like miremex and requip work their effect is slower than sinemet and do not react as well..I would like to try the agonists sometime to compare.

This doctor gave me a good report and said he expected my course of PD to be slow and steady like it has been in the past.



#19 New normal

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Posted 27 June 2014 - 10:06 PM

Hey,

There is a great article on the home page of this site which dismisses the tlevodopa phobia claims. A good read.

J
Dx'd 6/13. Age: 67 mono therapy carbidopa/l dopa 50/200 4x daily
Normal DaT scan, normal MRI

#20 miracleseeker

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Posted 28 June 2014 - 12:35 AM

Is there really a guarantee that taking more Sinemet is not doing you harm in the long run?  How do you explain all the people that have raging dyskinesia  as a result of too many Sinemet?   Of course the down side from limiting what you need will make you miserable so what can you do right?    Just go with the flow and live in the present.  If it's working for you now then be happy.  Hopefully something will be coming soon to make this disease so much more tolerable.  Hang in there!

 

 






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