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bgeorgejr

DaT scan results

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bgeorgejr    0

I was diagnosed with PD in 2014 by a disability determination physician. I got an appointment with a local neurologist and diagnosis was confirmed. I then decided to take my care to the next level by adding a movement disorders specialist to my team. At that appointment I was told by him that I did not have PD, but had essential tremor. This was just too confusing for me so I had a DaT scan done which revealed good comma shapes on both sides. Is this test definitive, and will I be free from Parkinson's from here on out? Thanks for your input in advance! Robert

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Dr. Okun    409

If the DAT is normal at this moment you likely do not have PD.  It will not be able to predict if you develop it in the future, but it sounds like very good news.

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Allan    6

Dr.  Okun,

 

This is the third DaT Scan that you have commented on recently and indicated that a normal result  indicates the individual does not have Parkinson's.  What  are your thoughts on those that respond positively to Sinemet and have a normal DaT Scan?  I can see the placebo effect working for a short period of time but over the long haul, one would think the effects would wear off.   I was under the impression that the DaT Scans were not 100%, more like 80% effective. Is that 20% falling into some other category? What would cause an individual with Parkinson's to have a negative DaT Scan?  What would the effects of long term usage of Sinemet have on someone who does not have Parkinson's?  Would they develop dyskinesia? 

 

The reason for my questions is there was a time where your comments weren't so 100% on this subject.  I had a normal DaT Scan a couple of years ago.  The right side could be interpreted as showing a slightly smaller comma shape but it was negligible in everyone's opinion.  After the Dat Scan, my diagosis was really up in the air for a while with a whole new set of blood tests being ordered. Early last year, my doctor decided to administer a sinemet challenge to see if we were dealing with DRD. They tested me before the challenge with the basic neurological exam, i.e. finger taps, rigidity test, handwriting sample, walking.  After doing the challenge, I showed definite improvement in all areas especially in the handwriting challenge which showed a remarkable amount of improvement.  After the challenge, my doctor scrapped DRD (I prefer this diagnosis) and diagnosed me with PD.  It took about 6 months to fine tuned my dosage.  I take 1mg of Azilect in the morning and 1 25/100 sinemet every 5 hours during the day and a 50/200 sinemet cr at bed.  I am pretty much symptom free.  I'm sleeping through the night every night now for the first time in several years. I was waking up two to three time a night to go to the bathroom.  I was also going to the bathroom just about every hour during the day and now I'm a normal person.  Every so often, I'll get a tremor in my thumb, be a little stiffer (usually in my hand first), or have some balance issues just before the next dose.   Based on you comments recently, I suspect you would say I don't have Parkinson's.  I'm a little confused and I would assume that others who are in my boat would have the same confusion.

 

Thanks for your time.

 

Allan

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Dr. Okun    409

I think if you have multiple repeat DAT scans that are normal that regardless of the dopamine response it is not likely Parkinson's disease.  There can be other movement disorders and causes and an in person second opinion may be helpful.

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Edward Sky    3

I am having a similar issue. The thing that I find the most frustrating I get the feeling that not all the science is in on the DAT scan.  I read an article the other day written by a german team that tremor based parkinson's show up differently on a DAT scan the rigid type Parkinson's.  The tremor based maintains comma form.You don't read that in any of the Parkinson's books. 

 

I tried to contact the person who read the exam but they seem to important to communicate with a lowly patient. I just want someone else to read it.  I took it to another Neurologist and he refused to read it and referred me to another doctor.   He treated me like I am some type of drug addict.

 

Now I am without a doctor who will write me a script for my Parkinson's meds just because one doctor undiagnosed me based upon a DAT scan.

 

My frustration level is through the roof.  I would just give up if my family didn't encourage me to keep trying. 

 

See the comparison of the difference below.

 

34267f7921898764aeafd5d0c1ed16c0.jpg

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Dr. Okun    409

I am sorry for your frustration.  A second opinion is a good idea as diagnosis should be based on DAT looking different on each side of the brain (one side less than the other in multiple cuts on the imaging).  It can be tricky and when in doubt we follow clinically and repeat the DAT in a year.

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