When I was first diagnosed with Parkinson’s disease (PD) in 2015, I asked the neurologist if there was a definitive test to confirm a PD diagnosis. I mentioned a DaTscan, but he said the test is not entirely conclusive. He also indicated that DaTscan results likely would not change his prescribed course of treatment for me.
His view was that the best way to confirm a PD diagnosis is to give a patient the medication levodopa to see if PD symptoms disappeared. Other neurologists I consulted for second opinions concurred with his assessment.
What is a DaTscan?
DaTscan is a medication that is injected into the bloodstream to assess dopamine-containing neurons that are involved in controlling movement. The contrast agent ioflupane (123I) is distributed around the body in the bloodstream and accumulates in the area of the brain called the striatum, where it attaches to the structures that transport dopamine. The patient then has a single-photon emission computed tomography (SPECT) scan.
The DaTscan test was designed to differentiate parkinsonian syndromes from essential tremor. PD is the most common form of parkinsonian syndromes, but there are other forms, including multiple system atrophy and progressive supranuclear palsy.
A comparison between a normal and an abnormal DaTscan can be viewed here. A normal DaTscan will show two distinct comma-like or crescent shapes. An abnormal DaTscan will have two period-like or oval shapes, or a combination of period and comma shapes, indicating a reduced uptake of DaTscan in certain areas of the brain. Parts of the image that are “lit up,” indicate more surviving brain cells. Dark areas could mean either PD or parkinsonism.
My DaTscan image showed that the right side of my brain is less “lit up” than the left side. The right hemisphere of the brain coordinates the left side of the body. The left side of my body is the one most affected by PD, so it makes sense that my right side brain is less “lit up.”
Am I convinced that I have PD?
Three years after my diagnosis, I am still struggling to find relief from my symptoms and slow the progression of this disease. I exercise, eating a mostly vegan and gluten-free diet, take Sinemet (carbidopa-levodopa), and use the Neupro transdermal patch. I am working with my current neurologist to fine-tune my medication “cocktail.”
I had wondered whether I did have PD since I’ve never had an “aha” moment in which I feel somewhat normal after taking medications. People tell me I look fine and they don’t observe any external signs of the disease. However, my tremors are internal and I feel horrible and constantly fatigued.
I am subjecting my body to what I believe are toxic medications to treat a disease that I feel has been subjectively diagnosed. My symptoms have not been completely alleviated with my current exercise, diet, and prescription medication regimen. I wanted more concrete evidence that I have PD, so my neurologist prescribed a DaTscan. Much to my dismay, the results were abnormal and compatible with Parkinson’s syndrome.
Seeing my brain image with areas not “lit up” where they should be, when contrasted with a normal DaTScan, made my diagnosis very real for me. I have a form of parkinsonian syndrome — most likely PD.
Would I still have gotten a DaTscan?
It was important for me to have confirmation other than my symptoms of abnormalities in my brain. I think this scan can be used as a baseline to follow my disease progression.
So, yes, I would have still gotten this test, although the $2,000 out-of-pocket cost upfront may have given me pause.
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