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Parkinson's Disease Message Board
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Old 03-24-2013, 05:37 PM   #1
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Lablady2 HB User
New and confused

Hello to all. I am 58 and have had tremors in both hands (and occasionally in my head) for a few years but in January of this year the tremors began to interfere with my activities of daily living. My PCP put me on a VERY low dose of carbolevodopa until I could see a neuro. I saw the neuro this last week, and long story short , yes, I have tremors but a lack of other symptoms no dx of PD could be made. She did, however, double the dosage of the Sinemet, which does help the tremors. I can actually feel it wear off, which is very weird. The approach of the neuro is "watch and wait"...is that typical? Thanks for any help you can give.

 
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Old 03-24-2013, 07:22 PM   #2
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Remedygirl HB User
Re: New and confused

I can't emphasize enough - you are headed on a dangerous path with the drug
Sinemet - I have found out 5 years too late. Tremors are nothing compared to
the pain and trouble caused from the drug for anyone who has taken it for any
length of time. Please read the free article on the internet "Once Upon A Pill"
Just google it in. It was written by a non-profit organization and explains just
what parkinsons drugs are and how they ruine a person's life. From very sad
experience with parkinson's drugs I would recommend to everyone - wean off
them and never look back. Please read the article - we are talking about some
ones life here. Your life is important - you can't believe how drugs can rob you
of life until you make a poor choice of starting them. It is a river of no return
for all but a wise few.

 
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Old 03-24-2013, 08:09 PM   #3
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Lablady2 HB User
Re: New and confused

Quote:
Originally Posted by Remedygirl View Post
I can't emphasize enough - you are headed on a dangerous path with the drug
Sinemet - I have found out 5 years too late. Tremors are nothing compared to
the pain and trouble caused from the drug for anyone who has taken it for any
length of time. Please read the free article on the internet "Once Upon A Pill"
Just google it in. It was written by a non-profit organization and explains just
what parkinsons drugs are and how they ruine a person's life. From very sad
experience with parkinson's drugs I would recommend to everyone - wean off
them and never look back. Please read the article - we are talking about some
ones life here. Your life is important - you can't believe how drugs can rob you
of life until you make a poor choice of starting them. It is a river of no return
for all but a wise few.
Thanks for your reply. I will read the article but I must confess that I am now doubly confused. Without something to relieve these tremors I have no choice but to quit work, and that's not much of an option. Any suggestions?

 
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Old 03-27-2013, 07:31 PM   #4
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Remedygirl HB User
Smile Re: New and confused

You may get some relief from the tremors by using evening primrose oil.
Also vinpotocine is also good. Today I read that urine therapy helps
with tremors. I hope you find some relief. Perscription drugs are very
dangerous. The weird feeling you get when they wear off is called a crash.
It gets worse as time goes on causing breathing panic attacks, gait freezing,
studder steps. Parkinson's drugs cause harm to your organs and eyes.
When a person tries to get off Sinemet too quickly they can land in the
hospital rigid as a board, breathing problems, blood in urine etc. The only
successful people to get off Sinemet have followed the 10% rule. Reduce
drug 10% every 10 weeks. Then reduce 10% from where you are now at.
It will take you 1-1/2 years to wean off the last pill. The body puts up a
greater fight now putting you thru every withdrawl trick it knows - it is
pain - tight jaw, rigid body, feels like you have a wrench on your heart and
stomach part of the day, can't sleep well at night, studder steps, can't
care for self some of the time. I have just described what happens to someone who has been on sinemet for years. If you have just started
sinemet you should be able to reduce the pills 1/4 tablet every week to
10 days.

 
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Old 04-30-2013, 02:52 PM   #5
2th 2th is offline
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2th HB User
Re: New and confused

I was diagnosed with Parkinsons last year. I think the "watch and wait" approach you mentioned is pretty common. It came as a surprise to me that there is no standard blood or urine test that allows a doctor to say "Yes, you have "X" units of "such and such" and therefore I am 100% sure you have Parkinsons Disease." Instead, diagnosis is based on evaluation of symptoms like tremors and various movements so don't be surprised if there is some uncertainty in the diagnosis.
There are several different medications that can be used and each one has side effects. So it's common to try something, then change the dose up or down and maybe try something different. There are no drugs that cure the disease. They are all designed to reduce problems as best as possible.
Two resources that I found helpful: (1) The Parkinsons Foundation has excellent reading materials that are understandable and explain a lot. (2) Although Neurologists are some of the brightest people on earth there are many of them who go and get even more training and sub-specialize - these are called "movement disorder specialists." You may want to see one. Good luck!

 
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Old 04-30-2013, 05:53 PM   #6
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Join Date: May 2005
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Lablady2 HB User
Re: New and confused

Quote:
Originally Posted by 2th View Post
I was diagnosed with Parkinsons last year. I think the "watch and wait" approach you mentioned is pretty common. It came as a surprise to me that there is no standard blood or urine test that allows a doctor to say "Yes, you have "X" units of "such and such" and therefore I am 100% sure you have Parkinsons Disease." Instead, diagnosis is based on evaluation of symptoms like tremors and various movements so don't be surprised if there is some uncertainty in the diagnosis.
There are several different medications that can be used and each one has side effects. So it's common to try something, then change the dose up or down and maybe try something different. There are no drugs that cure the disease. They are all designed to reduce problems as best as possible.
Two resources that I found helpful: (1) The Parkinsons Foundation has excellent reading materials that are understandable and explain a lot. (2) Although Neurologists are some of the brightest people on earth there are many of them who go and get even more training and sub-specialize - these are called "movement disorder specialists." You may want to see one. Good luck!
Thank you!

 
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