Parkinson's Disease Tulip


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Old 12-21-2017, 04:02 PM #1
proudest_mama proudest_mama is offline
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Default In a pickle

Dear Fello Cyberspace friends:

I'm in a pickle and don't know what to do about it. I'm hoping someone out there can help me out.

I've had Parkinson's for 13 years now, diagnosed at the age of 44. I currently live in a senior retirement complex

I can't go into any details but I believe that my Carbidopa/Levadopa has been altered. I am either given an extremely low dose or a placebo.

Do any of you know if there is a blood/urine test that can see if I'm getting a placebo/

Alternatively, does anyone know of a lab I could call and talk this over?

Any and all help is appreciated.
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Quoted by: Maya Angelou (Reader's Digest Oct. 2006)
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Old 12-21-2017, 06:54 PM #2
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I've read that some generics / manufacturers can vary quite a bit..
If you can read the label you can take a note of the manufacturer and check the name..

You can use our search tool for past posts mentioning Sinemet (Carbidopa-Levodopa) ) strength.. https://www.neurotalk.org/search.php

Are you in control of your own meds the whole time?

Many do need to have meds adjusted at some point..your Dr may allow a n increase with only a phone call explaining what is happening, or if many symptoms/issues are increasing.. might be good to make an appt..
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Old 12-21-2017, 09:33 PM #3
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Default an explanation

I am not in control of my own medicine (because I live in an Assisted Living facility) which is part of the problem. And I do have a neurologist appt. but can't get in until February 2. Yes, I'm on the list if they have any cancellations.

Again, I can't go into details, but the problem I am having is not due to generics, needing a stronger dose of Sinemet, etc. I believe my medicine has been purposely altered. I just don't know if there's a test to prove so. I WILL get to the bottom of this one way or another. The good Lord above is seeing me through.
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People will forget what you said,
people will forget what you did,
but people will never forget how you made them feel.


Quoted by: Maya Angelou (Reader's Digest Oct. 2006)
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Old 12-22-2017, 12:55 AM #4
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I'm no lawyer, but ...

If you have been formally declared mentally incompetent, then all kinds of decisions about your medications might be being made behind your back.

But if not, then it seems to me it would be extremely risky for a doctor or nurse to provide you with medications that differ from what you are being told you get. That would be a sufficient form of malpractice to end one's career, and could be prosecuted as a crime too. In other words, if this is indeed happening to you, it has put the career and possibly the freedom of the person doing this to you at great risk. Because of that, my opinion is that it is unlikely.

If it is your own family you mistrust, you should be able to issue instructions to your assisted living facility about them (again, only if you are not formally mentally incompetent).

Perhaps there is a third alternative. Perhaps the medications that you are on are making you a bit paranoid. I think this should be considered (by you), though I am not in a position to judge. If you google for Parkinson's and paranoia, you may find something that helps you. Please note: If you are suffering from a mental consequence of your medication such as paranoia, it *won't* feel like it. So you need to deal with this intellectually, in the abstract. You can't ask yourself "Do I feel paranoid?", because paranoids never do.

I'll close by once again saying -- I'm not a lawyer (or a doctor), so perhaps the best I can do is get you to think about the options.

Dan
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Old 12-22-2017, 02:34 AM #5
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This thread may be of interest:

How to measure levodopa and dopamine content?

A simple way to detect most tampering would by a visual identification: look at the shape, colour and any markings on the pill .

Also, not conclusive, but certainly suggestive, you could accurately weigh a pill. I think it unlikely that a placebo will be close.

Alternatively, you may wish to consider natural reasons for what you are experiencing. You mention a "placebo". Does this mean that you're taking pills, but they are having no effect. Three things come to mind here:
- your dose is too low to cross the "on" threshold. What is your daily regimen, doses/times etc.? As the disease progresses doses that once worked may no longer do so.
- the drugs are interacting with protein in your diet.
- you are on a new generic which has less levodopa content or, perhaps, a lower bioavailability of levodopa.

John
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Old 12-22-2017, 02:06 PM #6
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Pill identifier - hope the link works for you..
Carbidopa and levodopa - Pill Identifier | Drugs.com

You should be able to ask your doctor to check on this with a phone call..
Or speak with a manager at the assisted living if you think it is a staff issue and not a pharmacy issue..

If you are taking other medications also they might be interacting or causing confusion, hallucinations or delusions..
If this might be the case, your dr should see you sooner, you may need to be clear that it is urgent..
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Old 12-24-2017, 12:02 PM #7
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Quote:
Originally Posted by proudest_mama View Post
Dear Fello Cyberspace friends:

I'm in a pickle and don't know what to do about it. I'm hoping someone out there can help me out.

I've had Parkinson's for 13 years now, diagnosed at the age of 44. I currently live in a senior retirement complex

I can't go into any details but I believe that my Carbidopa/Levadopa has been altered. I am either given an extremely low dose or a placebo.

Do any of you know if there is a blood/urine test that can see if I'm getting a placebo/

Alternatively, does anyone know of a lab I could call and talk this over?

Any and all help is appreciated.
which strength of C/L are you taking, 25/100, 10/100, 50/200CR, 25/100CR? if you aren't sure can you describe the pill, shape, color and any symbols on the pill.
there have been shortages of the mylan brands and for me at least, i can't tolerate some of the other generics and they seem to be less effective. so bottom line, are you getting a different generic? the pharmacy will know.

so if the problem is you were switched to another generic because of unavailability or because the other generic was cheaper, and it isn't working well enough, then you have to ask the pharmacy to try to get the generic that you liked. if they can't, and the replacement generic isn't making you sick, then talk to your doctor about increasing the dosage.

if your're getting the same generic as before then you've got a serious problem and need to contact the nursing home and if they can't help you contact the pharmacy, maybe there was a bad lot, maybe the pharmacy unknowingly supplied bogus C/L - never heard of that happening. if nothing has changed then there's something about you that has changed, maybe gastric emptying has slowed, you have a new bacteria in your system, in which case i assume you'll contact your neuro.
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