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johnbonifer

dat scan or all in head

44 posts in this topic

Definitely worth it to wait for the DatScan. Never a good reason to take meds unnecessarily. Just make sure your insurance company will pay for it.

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I'm sorry John, I can't for the life of me find one positive thing to say about your experience. I've read it 4 times now. Walked away. Went out of the room, distracted myself hoping I could find a better way to say how full of crap your dr. is, but I couldn't. I guess they shavel it in all 50 states. Yikes!

Your Dr. needs a datscan because he can't trust his own exam skills, and my Dr is so god like that he doesn't believe in datscans even if they are abnormal. It's no wonder people get depressed and don't trust doctors.

Good luck!

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Hello, john b from indiana.

 

In most cases no cause is ever found. Only about 5% of PD is genetically transmitted. The word the neurologist used with me was idiopathic, which basically means they have no earthly idea why I got it. It's frustrating to hear that, especially for me, who likes to have an explanation of everything so I can deal with it and fix it.

 

I do not understand his fear of the placebo effect of Sinemet. Perhaps he meant to get the Datscan done first. A Sinemet trial was one of the first things my doctor tried.

 

If your gut tells you this is not the best doc for you, keep looking. I'm sure you will know the right one when you find him or her.

 

Let us know what your Datscan shows. I didn't have one until last summer. It showed that I have very little uptake of dopamine on both sides of my brain. It was so obvious that I had PD that I thought it was sn unnecessary expense, but my MDS at the time insisted.

 

Dianne

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Wow really??

What a dumb thing to say to someone looking for some answers. Even if you didn't have PD there can still be so many other things it could be. Many other neuro diseases can mimic PD and a good MDS should be able to narrow it down over time. Before I got my dx everyone thought I had MS because many of the symptoms can be similar. I was finally referred to a MDS who took the time to research my history, perform the right test, and ask the right questions. Not once did I ever hear anything about it being all in my head. Guess I'm luckier than I thought when it came to finding a good doctor.

 

Granted a DAT scan can def help with a dx, but even those don't always tell the tale. I've heard of people in the advanced stages of PD who's DAT scans appeared normal or inconclusive. In fact I believe we have a few here. I really don't know what to tell you but I wish you the best of luck at getting some answers.

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It's weird and I don't understand, but I'm sure someone (Christie?) could explain how a DatScan can show NO abnormalities in dopamine uptake in your brain, and yet you could still be diagnosed with PD, sometimes even advanced PD. Just doesn't make any sense to a goober like me...

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Any Neuro that says " its all in your head" needs to be reported and I would be looking elsewhere....

 

That is a cop out...

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I had a normal DaT but dx'd w/PD. The PD has increased leaving no doubt in the diagnosis.

 

I think you shd address yr concern to Dr Okun.

 

And I think the NPF shd take some action steps to get the word out to the neuros..the lack of knowledge of recent findings in the field of PD among practicing doctors is getting absurd...and a danger to patients.....UNBELIEVABLE...?there needs to be an assertive program to inform doctors...

 

It really disturbs me to read stories like this OVER AMD OVER AGAIN!,,,

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John:

 

Next time your doctor says she/he is afraid of a placebo effect from Carbidopa-Levodopa, ask him/her: "a placebo effect on which symptom?"  Your writings indicate you have more going on than the original essential tremors and Parkinson's is so much more than tremors.  

 

Ask: "how long will this placebo effect last between doses, or will one dose cure everything forever?"  

 

Ask your doctor, "if a placebo effect is such a positive proof of a psychological condition, isn't it worth finding out right now whether I have a psychological condition--rather than waiting six-months for a referral that if is negative could just return me here to you again?"

 

I was talking with a doctor a few years ago and he said that the way to test whether Carbidopa-Levodopa was having a placebo effect was to cut the patient off after a couple of weeks.  I thought that was the most cruel thing anyone could do.  "Intentionally putting someone back in pain?," I said.  The reasoning of his reply seemed sound, "a patient who experiences a placebo effect won't have a return of symptoms if they are taken off medication."

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Placebo affect only works when the patient wants it to work.. Say u tell him u pray it doesn't work then the placebo effect wouldn't apply.

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Drummergirl:

Posted Yesterday, 04:51 PM

Any Neuro that says " its all in your head" needs to be reported and I would be looking elsewhere....

That is a cop out...
          
 
I agree Karen, I actually had a Neuro tell me that. I promptly changed Dr.'s.
 
Although, if you think about it, when dealing with a Parkinson's Dx., when a Dr. tells you; "its all in your head"......... There's a really SICK irony there..............................
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John:

 

Next time your doctor says she/he is afraid of a placebo effect from Carbidopa-Levodopa, ask him/her: "a placebo effect on which symptom?"  Your writings indicate you have more going on than the original essential tremors and Parkinson's is so much more than tremors.  

 

 

 Exactly !! There are "hard" neurological signs, such as cogwheel rigidity, which are beyond  placebo control. An experienced neurologist should be able to differentiate between organic PD and psychogenic parkinsonism, WITHOUT a Datscan.

 

Datscan results should always be correlated to the clinical findings. They are just pieces of the puzzle and not the whole complete image as some doctors tend to think. They cannot and should not support any diagnosis on their own.

 

 

It's weird and I don't understand, but I'm sure someone (Christie?) could explain how a DatScan can show NO abnormalities in dopamine uptake in your brain, and yet you could still be diagnosed with PD, sometimes even advanced PD. Just doesn't make any sense to a goober like me...

 

Musicman, there are several reasons why a Datscan -as any other scan or imaging test- may give false positive or false negative results. This is actually a very interesting issue...I will get back on this later...

Edited by christie
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My Movement Specialist also was concerned with placebo effect on my 1st visit.  I had already been taking sinemet for a month since I was unable to move either side of my body without it.  She stated it much nicer that without the meds that my movements are not typical of pd but some are.  So she order a datscan and said even if comes back negative she will help get to bottom of what is causing this since she felt it was something still neurological.  She also stated I must have a underlining mental condition because that is what movements looked like.  Which she was correct I had been trying to fool myself for almost 19 years or more nothing was wrong. 

 

My datscan came back abnormal 2 and I got treatment for mental condition finally and I am doing much better.  Stress is a bad thing with pd and with meds and therapy can do wanders.

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Thank you RN, excellent articles. The primary pieces of information I take away from the first article by Dr. Okun is thus;

 

1)  That the DaT test/scan is over-used in clinical practice.

2)  That the DaT test/scan is only FDA approved to distinguish potential Parkinson’s disease from essential tremor.

3)  That the DaT test/scan does not actually diagnose Parkinson’s disease (could be parkinsonism). 

4)  That the PET scan is also overused, though it can be a more powerful diagnostic tool when in the right expert hands.

5)  That after the introduction of Levodopa, the DaT/PET scans will return to almost normal.

 

From the second article I found the following EXTREMELY interesting:

 

  • 1) "In the study of early Parkinson’s, the overall accuracy of DaTscan was equal to that of the accuracy of a physician’s diagnosis: both were 84 percent."
  • 2) "For people with more advanced PD, the overall accuracy of DaTscan was likewise identical to that of a physician’s diagnosis: both were 98 percent."
  • 3) "The two approaches have mathematically identical accuracies for diagnosing PD, but DaTscan is much more expensive than a clinical examination."
  •  
  • The gist of this is, that the patient NEEDS to find a good MDS that is up to date and knowledgeable about current developments and clinical practices in the world of Parkinson's, and has enough clinical experience to be able to trust his/her own judgments and assessments of the patient sitting in front of him/her, as well as how to proceed in the patient's best interest. 
Edited by graflexmaster
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Thank you RN, excellent articles. The primary pieces of information I take away from the first article by Dr. Okun is thus;

 

 

5)  That after the introduction of Levodopa, the DaT/PET scans will return to almost normal.

 

 

Levodopa has no effect on the Datscan or Petscan results (pre-synaptic imaging).

Levodopa may only affect post-synaptic PET imaging (which is used to differentiate between PD and PD-plus syndromes, like MSA).

Edited by christie

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Christie;

Sorry about that. I ment to include only the PET scan in that reference, as stated in the description applied to the second image example in Dr. Okun's article:

 

"An example of a PET scan is below and it reveals: in the top panel a normal scan, in the middle panel abnormalities in the putamen (red uptake in the figure) in a patient with Parkinson’s disease, and in the lower panel a return to an almost normal scan following the introduction of levodopa."

 

ref article:

 http://www.parkinson.org/find-help/blogs/whats-hot/april-2014

 

<edited to repair link>

Edited by AB-Normal

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I'm getting one done one next week.. Now I'm worried that it will be useless

 

Bills, you don't have to worry about that !!  As I said before, Datscans and Petscans which are used for the diagnosis of PD (pre-synaptic imaging) are NOT affected by levodopa.

 

The only scan affected by levodopa is postsynaptic dopamine imaging, and this is used only for differentiating between PD and PD-plus syndromes. (post-synaptic neurons remain intact in PD while they are affected in PD-plus syndromes).

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Christie;

Sorry about that. I ment to include only the PET scan in that reference, as stated in the description applied to the second image example in Dr. Okun's article:

 

"An example of a PET scan is below and it reveals: in the top panel a normal scan, in the middle panel abnormalities in the putamen (red uptake in the figure) in a patient with Parkinson’s disease, and in the lower panel a return to an almost normal scan following the introduction of levodopa."

 

ref article:

http://www.parkinson.org/Patients/Patients---On-The-Blog/April-2014/An-Update-on-DAT-Scanning-for-Parkinsons-Disease

 

Michael, it's more complicated than that....

 

The example illustrated in the article refers to POSTSYNAPTIC PET imaging. This is NOT the imaging test routinely used for the documentation  of  degenerative  parkinsonism (including BOTH PD AND  PD-plus syndromes), but a test used to differentiate BETWEEN PD and PD-plus syndromes.

 

Datscans (and presynaptic PET scans)CANNOT differentiate between PD and PD-plus syndromes exactly because they can only detect PRESYNAPTIC dopamine receptors. This type of scans are not affected by levodopa. Patients don't need to stop taking levodopa before the scan.

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My own experience with Datscans was the MDS suggesting it only to then take away the suggestion because of iodine allergy.  I seem to run into that a lot, "we'd do this but we can't because of that."  So frustrating.

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Bills, you don't have to worry about that !! As I said before, Datscans and Petscans which are used for the diagnosis of PD (pre-synaptic imaging) are NOT affected by levodopa.

 

The only scan affected by levodopa is postsynaptic dopamine imaging, and this is used only for differentiating between PD and PD-plus syndromes. (post-synaptic neurons remain intact in PD while they are affected in PD-plus syndromes).

Ya I know what your saying. . Tge post synaptic would be the one recievingbthe dopamine.. the review will be done on the post synaptic.. right?

 

My worry is if the datscan is accurate.. add to the fact tgat I only have close to two years of known symptoms... maybe I dont have much dopamine loss yet and it will not show.

Edited by Bills

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