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#1 shooter

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Posted 30 November 2012 - 03:57 PM

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.

#2 Brad24

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Posted 06 December 2012 - 07:41 AM

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.

DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#3 shooter

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Posted 06 December 2012 - 11:01 AM

Still awaiting results,i have read mixed reviews on accuracy vs. a neuro.Will let you know as soon as i find out.

#4 williamg

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Posted 07 December 2012 - 09:45 AM

I saw my MDS yesterday and he is going to have me do a DATscan also. I am also curious to here your results.
I'm not crazy, I'm just special!! ..No, wait..... Maybe I am Crazy. One second...... I have to talk to myself about this... Hold on......................

#5 shooter

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Posted 09 December 2012 - 12:27 PM

Hoping i get a call monday!Didnt think it would be more than a week for results! :neutral:

#6 Kristakj78

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Posted 09 December 2012 - 04:00 PM

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.

#7 shooter

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Posted 11 December 2012 - 03:47 PM

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.

#8 Brad24

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Posted 12 December 2012 - 06:22 AM

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
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#9 Kristakj78

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Posted 13 December 2012 - 12:15 PM

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.

#10 pwoodworker

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Posted 04 February 2013 - 06:14 PM

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?

#11 eloah

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Posted 04 February 2013 - 08:06 PM

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.

#12 pwoodworker

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Posted 04 February 2013 - 09:47 PM

I am 100% disabled, Parkinson's not being one of the issues. So insurance isn't an issue and I have been living with PD for about 11 yrs. not sure it is worth it at my age a young 59.

#13 christie

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Posted 05 February 2013 - 08:42 AM

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.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#14 cberns

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Posted 05 February 2013 - 09:46 AM

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/...eteam.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. :razz:

#15 shooter

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Posted 05 February 2013 - 09:49 AM

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! :???:

#16 christie

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Posted 05 February 2013 - 12:31 PM

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, 05 February 2013 - 12:38 PM.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#17 Kristakj78

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Posted 06 February 2013 - 09:08 AM

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.....

#18 shooter

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Posted 18 February 2013 - 01:19 PM

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

#19 christie

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Posted 18 February 2013 - 05:58 PM

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, 18 February 2013 - 06:00 PM.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#20 shooter

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Posted 18 February 2013 - 07:33 PM

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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