My DaTscan Results Made My PD Diagnosis ‘Real’

My DaTscan Results Made My PD Diagnosis ‘Real’

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.

My DaTscan

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.

Why now?

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.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

At the age of 62, I started writing to inspire conversation about mental illness and suicide after my life partner, Steve Tarpinian, took his own life in 2015. Seven months after Steve passed, I was diagnosed with Parkinson’s Disease. Now, in addition to Steve’s story, I am telling my own.
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At the age of 62, I started writing to inspire conversation about mental illness and suicide after my life partner, Steve Tarpinian, took his own life in 2015. Seven months after Steve passed, I was diagnosed with Parkinson’s Disease. Now, in addition to Steve’s story, I am telling my own.

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12 comments

  1. William says:

    I had the DaTscan and it was key to the Diagnoses of PA. But Like you I still have visual tremors. My neurologist has told me that Medication may not control my Tremors.

    • Douglas Neslund says:

      Try CBD oil. My tremors stopped immediately after the first 15mg softgel. CBD oil is legal in many states, and is not a hallucigen.

      • Jean Mellano says:

        Hi Douglas, thank you for your comment. I have tried CBD oil and saw no difference in my fatigue, bradykinesia or fine motor skills. Like most treatments for PD, CBD may work for some, but not all. 🙁

        • Anna Moreno says:

          I have tried CBD alone and THC alone the best benefits come from a combination of CBD/THC 1:1 seems to work best for me. But I take it when I feel spasticity increasing. I also don’t have visible tremors, but extreme fatigue, spasticity and other neuro symptoms, ie, frequent urination, muscle tightening, flushing, heat sensitivity.

          • Jean Mellano says:

            Hi Anna,It never ceases to amaze me how different we all are with our PD symptoms and what helps us. Some remedies are miracles for some folks and those same remedies do nothing for others. I am still searching for my holy grail 🙂

  2. I am frustrated! I had a DaT scan done and when my Neurologist reviewed the abnormal scan he dismissed it. I have unresolved tremors yet he being the PD expert has determined its no big deal. I think I am going to fire him and seek other help.
    Any suggestions?
    Travis

    • Jean Mellano says:

      Travis, i am not a medical professional so I cannot advise you, but I do think second opinions, even third opinions are worthwhile. If you can get the 2nd opinion from a movement disorder specialist , all the better.

  3. Lora Penza says:

    I’m having a DatScan on Wed. My Movement Disorders Neurologist retired and I have a new doctor. The Sinemet works pretty will for the visible tremor but not as well for the internal ones so the doc thinks maybe I don’t have PD. I’m not getting worse as fast as he expects.

    Here is a questions: Did you take your Levodopa the day of the test? I’m to take mine but wonder if it affects the results. And I still don and have an appointment to see the doc afterward despite leaving the nurse a message.

    Just nervous about it all.

    Thank you!

    • Jean Mellano says:

      From what I understand pd progresses differently in everyone. I was diagnosed in 2015 and I am thankful I still live independently. I forgot to ask the same question about taking my meds and the impact they might have on the results, but I chose not to take them. It is a non invasive test and now I have a baseline good luck

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