Placebo effect or medication effect?

I've been taking Sinemet for almost a month now and Azilect for a week, and my symptoms are much improved. My Neurologist gave me a tentative diagnosis of having Parkinson Disease. How do I know if it is not a placebo effect that I'm having? Stopping the meds would not answer the question because I can tell when it is getting close to time for the Sinemet because I start experiencing some of the tensness and aches and tremors again. So I know for sure if I stop the Sinemet I'll be back to having the full range of symptoms again.

If it is not Parkinson's what could it be? The tremors are resting tremors not action tremors so I don't think it could be ET.

I don't understand why the Neurologist made the diagnosis "tentative".

17 Replies

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  • 32% of pathologically confirmed cases were rejected

    neurology.org/content/42/6/...

    Also should you have P, after five years then a firm prognosis

  • Hi, Theresa, My mother has had essential tremor for as long as I can remember, it runs in the family. She is now 94. Still does her own gardening, takes care of her chickens. Lives alone. From what I have read and observed there is very little commonality between essential tremor and Parkinson's except perhaps the tremor. Also essential tremor does not respond to Carbidopa levodopa. Because of my family history essential tremor was one of my first diagnosis from a doctor, which I happily glommed onto, although deep inside I knew it couldn't be accurate.

    Your doctor may use the phrase tentative because the only real rock solid airtight diagnosis of Parkinson's is after we're dead and our brains are examined. Until then you sound like you're doing pretty well with the meds, hooray!

  • This: "I've been taking Sinemet for almost a month now and Azilect for a week, and my symptoms are much improved." says Parkinson's. Also, the placebo effect works really well in Parkinson's because positive expectations cause the release of dopamine, which is therapeutic /particularly/ for Parkinson's. If Sinemet did /not/ help, /then/ it would be cause to look for a different diagnosis.

  • Sounds like Parkinsons to me. I also have it but sinemet doesn't seem to help so I'd say you're in a good space.

  • Have you found something else to help grower?

  • Nothing yet but I'm relatively lucky, only have no left arm swing, bradykenesia in hands, body stiffness and masked face.

  • Do you really want to know if it's the drugs or the placebo effect? Your symptoms are reduced: rejoice. Some of the improvement is likely to be due to the drugs themselves and some to the placebo effect. The placebo effect is real and is to be encouraged. In my opinion, we should engineer placebos to have maximum effect.

    If you really want to know the size of the placebo effect on you, you can run a double blind test on yourself. First, baseline your performance using a tap test before taking a dose of Sinemet/placebo. In one bottle dissolve a vitamin C tablet in water. Stick an opaque envelope on to the glass. Put a piece of paper with an "A" written on it in the envelope. Seal the envelope. In a second bottle, call this "B" do the same, but this time additionally dissolve a Sinemet tablet into the vitamin C solution. Mix up the glasses so you don't know which is which. For your first dose select one of the bottles at random. Drink from it. Do a tap test one hour later. Don't check to see what letter it is, but put the envelope aside. When it comes time for your next dose drink from the remaining bottle, and one hour latter do a final tap test. Now open the envelopes and compare results. You will need to repeat this whole process several times to get statistical significance.

    John

  • What is a tap test?

  • A tap test is one of a set of objective tests used to diagnose Parkinson's, measure its symptoms and its progression. The most common variant of this test is to be asked to touch the index finger to the thumb, then move them apart, repeating the process several times. The medic will be looking for how frequently you can do this and how far your separate the finger and thumb. An easier variant to measure is the side-to-side tap test, where, in my implementation, using just the index finger, you press the q key on a computer, then p, then q etc.. I've implemented this on a computer, and you can use it immediately on:

    parkinsonsmeasurement.org/t...

    John

  • This is very helpful. Thanks for the link. I did the q/p test and my left side is much slower than the other right, but the funny thing is it is my right side that shakes the most.

  • Taking time to see the result of treatment is part of their training. They are methodical if they are good doctors, so of course it is not a sure diagnosis at first because you must have a good doctor.. PD and other neurological problems can be hard for a doctor to diagnose. That's all it is, they need to be methodical and cautious, which is good for you. Just be happy the treatment is helping you. Breathe girl. Having a diagnosis of PD has been troubling for every one of us, but just try and stay on your medication. Some patients have an emotional side effect to sinemet, they feel anxiety. I have it between doses sometimes not always. you are not alone.

  • Ii don't know why the neuros (rheumys and for all I know other specialists) never seem to explain what they are up to.

    When I was diagnosed the letter to the GP was headed up "Probable Idiiopathic Parkinsons". In case you are wondering idiopathic just means of no known cause

    After the next appointment in six months the Probable had disappeared from the letter to the GP and I was left to draw my own conclusiions.

  • Theresa, you've received plenty of good responses to your question about placebo, etc. I will just add that my initial, guarded diagnosis was "parkinsonism," meaning that it could have been ideopathic (cause unknown) PD, or one of a group of other things you definitely do not want: Multiple System Atrophy, Supranuclear palsy, vascular parkinsomism--to name a few. I think this conservative approach is part of the ongoing process of differential diagnosis, a way for doctors to pull the obvious weeds and then zero in on the remaining list of possible offenders. My initial diagnosis has most likely remained in the records, but 20 years after diagnosis I am still here. So, if it looks like idiopathic Parkinson's, smells like IPD (too bad I have no sense of smell anymore), and feels like IPD, that's probably what it is.

    Best wishes to you as you begin the journey.

  • I didn't think there was any difference between IPD and PD. The idiopathic just meaning that the origin is unknown which is the case with PD in general isn't it?

  • This whole business between Parkinsonism and Parkinson has me very confused even though I've read a lot about it.

  • Both these link were very informative. Thank you for posting them Roy.

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