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shooter

datscan

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Got a datscan today at Akron General Hospital.Technician let me see the pics afterwards.Saw that the right lobe was missing some of the tail.Wife says that makes since being my tremors on the left.Will see what doc says in a couple weeks.

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I am interested in hearing about your results. I am pretty new to this stuff. Is a datscan anymore accurate at a Parkinson's DX than a neurologist? Thanks for any information you can provide.

 

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I saw my MDS yesterday and he is going to have me do a DATscan also. I am also curious to here your results.

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I got a DAT Scan done. My "cashews" were dots...missing the comma tails. My MDS said that it makes her wonder how long I've actually been sick for. There are so many symptoms that you don't think too much of til you get a DX and then look back at the years.

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Finally got a call from my neuro assistant[after 4 calls from myself]She stated..... Results inconclusive ,cannot ruleout parkinsonian syndrome!My follow up with the Dr is on the 19th.I had hoped for a clearer result,but what can you do?My right comma on the scan was partially missing.

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Thanks for the info. I was planning on discussing the datscan with my doc today. A clearer result would have been nice. Have you ever had a second opinion from a Movement Disorder Specialist? Since posting with you earlier I have done some reading on the datscan and most things say its no more accurate than a good neurologist. I have received a second opinion from a MDS and she confirmed the initial DX so I will probably not pursue the datscan. Still plan on discussing it today though just in case.

 

Good luck,

Brad

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I got approved for disability rather quickly, (from what I've read on the forums), and I belive the DAT Scan is what did it. My neuro said it came back real abnormal, and that should do it for disability, and it did. I guess they wanted more "evidence," then just 3 neurologist and one PT's opinion. The scan solidified it. I had reduced levels in both sides of my brain, as per the images. I was expecting one side, since I'm so young, and it's mainly my right side.

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I am conflicted as too taking the daTscan. I have been DX with PD since 2001. Have had two opinions from neurologist that specialize in PD. now since the DaTscan has been approved, they want me to take it. All the research has shown that the results almost mimic each other. I am leaning to not taking it. Medication has proven successful so for and I just think the cost of test isn't going to give me any better resolution. Any suggestions out there?

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The datscan coupled with the mds's evaluation and meds is what the insurance company needed in order to continue my std and ltd insurance payments. Without the datscan the insurance company was questioning my diagnosis since i am so young. In my opinion it was well worth the cost.

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Hi Pwoodworker. Welcome to our forum.

I agree 100% with you that Datscan is certainly not worth it. As long as your diagnosis is clear, insurance is not an issue and your treatment works well for you.

Datscan is a good diagnostic tool for uncertain cases early in the diagnostic process, and is now approved...both of these are no good enough reasons for you to have one! radiation exposure is justified only when an imaging test is absolutely essential.

However, i fail to understand why your doctors want you to have the scan. are they unsure about the initial diagnosis? in that case ask them about a differential diagnosis. (essential tremor, for example). on the other hand, if your symptoms have clearly progressed and you have developed dyskinesias i don't think there must be any serious doubt about your diagnosis of PD.

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Shooter,

 

My neuro DX me in May 2010 and to confirm it, I was sent to a place called INDD for what at the time was the clinical trial DaTscan which confirmed PD. The MDS at INDD, Danna Jennings, was quite complete in her evaluation.

 

http://www.indd.org/

http://www.indd.org/meettheteam.htm#danna

 

My opinion differs from christie here in the fact that the DaTscan was used to confirm, not diagnose my PD state. It was pretty clear and gave me closure and a face to what I was fighting. The scan showed less of a comma on the right side of my brain, which explains the slow movement on my left non dominant side. Fortuanately for me, things has progresse minimally in 3 years and I attribute that to the confirmation I recieved post DaTscan.

 

If it was me, I think that it was worth it in my case. Only you can decide. Good luck. :-P

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My doctor upon follow up of the datscan informed my wife and i that he thinks the results[cannot rule out parkinsonian syndrome] are not reliable due to my weight.They dosed me 3 hrs prior to scan and i believe they are to dose according to size for proper uptake.And then he suggested another scan in a couple yrs and informed me after approx 8 yrs of seeing him it might be convergence disorder.Tommorrow we are seeing a mds at cleveland clinic hoping for some clarity!Its hard enough to accept the initial dx,let alone this.He also advised against returning to my employer saying conversion can lead to dementia.WTF! :?

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My opinion differs from christie here in the fact that the DaTscan was used to confirm, not diagnose my PD state.

 

i don't think we disagree...

Every imaging test is used to either confirm or exclude a clinical diagnosis/suspicion. The results of all laboratory and imaging tests are correlated to the patient's symptoms and the clinical findings. Only a physician can make a diagnosis. Datscan is and should be done only when there is diagnostic uncertainty about the clinical diagnosis. The reasons for this are obvious: a)it's a very expensive test, not always covered by insurance B) b)it involves exposure to iodine gamma radiation, thus slightly inceasing the cancer risk especially in younger patients c)the diagnostic accuracy of the test is a debatable issue, and actually much less than 100%-there are reports of autopsy proven cases of PD or Pd-plus with negative scans as well as cases of psychogenic PD with positive scans! d)the results of the test itself-even when in accordance to the clinical diagnosis-have no prognostic or therapeutic implications.

I agree with cberns that a Datscan is helpful for patients with difficulty accepting the diagnosis of PD. This is common in the early stages of PD when the symptoms are mild. However, Pwoodworker is not one of these patients. he has lived with PD for 11 years and does not seem to doubt his diagnosis or his need to be treated! Now,if his neurologists think otherwise, that's a whole different story.

Edited by christie

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Funny is that my insurance is STILL refusing to cover it, forget about it helping my insurance. They are calling it "INVESTIGATIVE" and not necassary. My Dr. has had her assistant put in so many codes to try to get around it. I have heard that if you put in an essential tremor code as opposed to a PD code, insurance won't kick it back. Not true in my case. Kicker is, my insurance INITIALLY authorized and approved it, and then kicked it out! Crazy. I have an old lawyer friend that may be helping me out there. Doesn't make sense. Unfair. I got a bill pushing $20,000 from the hospital! On a different note, it did help me obtain SSD within just a few weeks. Even my neuro said that without the scan, I prob wouldnt have been approved so fast. It was a catch 22 for me, but since I'm so young, I guess my neuro wanted to see me get it done, even though the meds help. That being said, I don't regret it, but gotta figure out this bill and my dumb insurance! Insurance stinks! My co pays went from 20 to 40 starting Jan 1st to see ANY specialist of any kind, so there goes my neuro co pay.....and had to all together drop the counselor. Ugh, insurance issues.....

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Saw Dr fernandez at cleveland clinic.After exam he offered another datscan and said possibly atypical essential tremor or conversion disorder!I passed on the scan for now.Someone flip a coin and let me know,this is all so frustrating.And the fact that i shouldnt go back to being employed where i was happy due to the risk of dementia and not being able to fall back on the disability makes things more troubling!

John

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John!

We all understand your frustration, one way or another we've all been there....uncertain diagnosis, conflicting doctors' opinions, tests and more tests with negative or inconclusive results, all leading to what seems to be like an endless waiting for the final diagnosis...it's nerve wracking.

 

Would you like to tell us more about your symptoms, your response to medication, the progression of your condition since initial diagnosis? Did the neurologist explain to you why he thinks this might be a conversion disorder or atypical essential tremor ?

 

PS: i fail to understand why a potential conversion disorder might be associated with an increased risk of dementia. i strongly doubt this is an established fact.

Edited by christie

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My tremor is eased by sinemet,i have a drop foot gait at times,cognitive has faltered in recent yrs.Shoulder pain,but not alot of stiffness in joints.Alot of upper arm and foot cramping.all of these symptoms are intermittant.As for the Drs explanation,he said in the 8 yrs or so since my dx i havent progressed as much as one normally would

Thanks

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Hey Shooter, good to see you still here. Actually it would be even better to hear that you got cured of PD.

 

Kristakj78, being from Canada, we don't even consider cost of tests. Free health care for everyone in the country isn't cheap, not a perfect system, is being stretched, but it works for me. I am glad that I don't have to worry about money and health in the same thought.

 

Fist to the sky, jb

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My tremor is eased by sinemet,i have a drop foot gait at times,cognitive has faltered in recent yrs.Shoulder pain,but not alot of stiffness in joints.Alot of upper arm and foot cramping.all of these symptoms are intermittant.As for the Drs explanation,he said in the 8 yrs or so since my dx i havent progressed as much as one normally would

Thanks

 

You haven't progressed much. so, whatever the cause of your parkinsonism, it's not something degenerative. that's GREAT news.

In the recent literature, there are several documented cases with symptoms of PD, very slow progression, and negative Datscans (Scans Without Evidence of Dopaminergig Deficit, SWEDDs). do these patients have a slowly progressive form of otherwise typical Parkinson's disease? do they have an atypical form of "Parkinson's" with a different pattern of cell loss (not visualized by Dascans?). do they have a conversion disorder/psychogenic parkinsonism? do they have some form of dystonic tremor? nobody really knows yet what these patients have.

Unfortunately, the diagnosis of a "conversion disorder" by non-psychiatrists -not only in neurology but also in most other specialties-is often used as a "wastebasket" diagnosis to include all cases for which the diagnosis remains unclear after long term follow up and diagnostic testing. that doesn't mean of course that this diagnosis is always incorrect, but truth is that many patients with atypical presentation of otherwise common diseases end up misdiagnosed with a conversion disorder.

 

If i were in your place i would also consult a psychiatrist. see if he agrees with the probable diagnosis of a "conversion disorder".

Regardless of the final diagnosis your symptoms should be treated! What were the treatment recommendations by your neurologist?

Are you on any meds now?

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My original dx was atypical pd .I was already being seen for major depression.Currently on pristiq w/little benefit.Neuro said to follow up w/psyc and continue present meds and possibly rescan[datscan]in a couple yrs.Psyc when informed with this unofficial dx advised me to get a 2nd opinion in cleveland.Currently waiting till next month to see the psyc.Thanks for your help and insight christie and everyone else.

John

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Psyc when informed with this unofficial dx advised me to get a 2nd opinion in cleveland.

 

Hmm...psyc does not seem convinced your neurological symptoms are caused by a conversion disorder. i am no neurologist, but i find difficult to believe that a unilateral (resting?) tremor responding to simenet is caused by depression only. just because the datscan is inconclusive and the progression is slower than "normal"...(by the way if there is any "typical" case of Young onset parkinson's i would like to see it!).

i truly hope you will find your answers soon.

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