My DaTscan Results Made My PD Diagnosis ‘Real’
(Courtesy of Jean Mellano)
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.
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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.
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Comments
William
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.
Hi William, luckily, I do not have tremors. Fatigue, poor fine motor skills and Bradykinesia are my main symptoms. I cant believe how costly the DatScans are!
Douglas Neslund
Try CBD oil. My tremors stopped immediately after the first 15mg softgel. CBD oil is legal in many states, and is not a hallucigen.
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
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.
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 :-)
Anne Deegan
When do I get results of dat scan and does it go to consultant doctor or myself?
I dont know Anne, in the USA, typically the results go to prescribing doctor..
Travis J Harrington
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
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.
Bonnie Lockard
Travis , since your scan was "abnormal" of course you still have the tremors, you DO apparently have Parkinsons! We're both frustrated! MY scan was "normal" indicating I DON'T have Parkinson's ,but my tremors are terrible!
I was originally diagnosed with PD by a PD specialist who was also at professor at a major univ. by my symptoms alone in March, 2020. I asked about the scan but she felt so certain about her diagnosis she dismissed it! A 2nd neurologist doubled the dosage of the carbadopa levadopa when I complained the meds had not improved any of my symptoms especially my extreme tremors. The potent med just exaserbated my hair loss. A 3rd motor specialist neurologist ordered a Datscan given all the C/L (sinemet) I had been on with no results. The scan came back "normal" 12/1/20!
I still have all the symptoms of Parkinson's, but we don't know what I have ? My older brother is a retired doctor who told me when he graduated from med school that medicine is not a science but an art with trial and error. I'm certainly finding that to be true!
Lora Penza
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!
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
Catrina
I have health insurance through my job. I was able to undergo a DAT scan as part of my diagnosis. I understand the scan cost £1,200 however I only had to pay £120 (which is the 10% excess) so my insurance covered the rest. I feel lucky. The results were abnormal and I was relieved as it helped me accept and come to terms with my diagnosis.
Catrina, the US is so behind in terms of allowing us access to reasonable pricing for treatments/meds. It was alarming when I saw my datscan results compared to a normal one. however, now i have a baseline and a little more explanation as to why my symptoms are occurring.
Peter
I'm getting a dat scan in two days. Does anybody else here have hand cramping where they can't fully open or spread their fingers or bend their wrists?
hi peter, your question id best to be asked on the forum:
http://parkinsonsnewstoday.com/forums/forums/forum/parkinsons-disease-symptoms/
Kari Williams
My sister is trying to obtain a diagnosis and one of her worst symptoms is the hand cramping. Her right is totally non-functional at this point. Trying to get a referral to a hand specialist since none of her other doctors have addressed this problem.
Don Roh
My wife was diagnosed with PD last year, tremor on the right side, stiffness, difficulty writing and some balance issues. Her DATscan revealed her left striatium had a Z-score of -3.8 on 3 regions of left side. According to my research = or < than
-1.67 is PD and < than -2.5 is severe. With covid-19 and phone in appointments its been hard to talk to the doctor and I certainly don't want to scare my wife. Her clinical expression doesn't seem much beyond stage one. Does anyone know if the Z score can extrapolate a prognosis going forward, or maybe a rate of progression? Im worried for her, thx!
hi don your wife is lucky to have her in your corner! Many doctors do not believe in DatScan as a diagnostic tool. for me, it confirmed i had PD. i have always felt the standard clinical tests to be very subjective. When I saw how the lit up sections of my brain were not symmetrical (right side was left lit up than left side), it convinced me that i had PD since right side of brain controls left side of body and my left side is more affected than my right side. I did not get caught up in the number values on the report. We are all different in symptom manifestation and how quickly we progress. What has worked the best for me in terms of feeling better is exercise and movement, especially Rock Steady Boxing. Thinking about what my symptoms will be like in my future is not good for me. Click on this link to find a Rock Steady Boxing location near you https://rocksteadyboxing.org/find-a-class/ Also, you might be better off creating a post with your datscan question in the forum on this website: http://parkinsonsnewstoday.com/forums/forums/forum/diagnosis%e2%80%8b-%e2%80%8binformation%e2%80%8b-%e2%80%8band%e2%80%8b-%e2%80%8bgeneral%e2%80%8b-%e2%80%8bquestions/
Don Roh
Thank you so much for taking the time Jean, ill suggest the boxing and move my question over to the other forum. Be well!
Jiti
I am very happy to see this useful information. Thanks a lot Jean and others for sharing your experiences.
My neurologist diagnosed me based on my clinical, dat-scan and MRI reports. My MRI scan shows perfectly normal brain. Datscan shows a small but significant z-score for putamen with right putamen more lit than left. My symptomps include mild tremors in left hand and foot, stiffness, a shift in gait, slower movements, and fatigue. He says that I have a mild form of Parkinson. He advises me to start with dopamine medication even though he thinks my condition is very mild. I have asked him for some time to think and understand my situation before I make a decision.
As far as I have checked the literature and on forums, there are mixed opinions on the effectiveness of medicines - no clear consensus on whether they reduce the progression of disease. Many patients have shared about 'off time' and having to readjust/increase the dose after a few years. Then, there are the side effects, e,g,, dyskinesias. My tremors of resting type - and don't bother me when I am busy (and happy). The other symtomps, stiffness, slowness and fatigue are confusing. They can be age related (I am nearly 60 year old female), right? Besides, I had a fracture in my spine two years ago, which eventually healed without surgery but resulted in collapsed disks in my lower spine. That also caused a lot of stress in my back, and slower gait.
I quit my stressful job to pay attention to my health. I am doing things to keep myself happily active like yoga, gardening, jogging etc. I also started accupuncture. I am feeling better ever since. I wonder - should I carry on managing my tremors without medication and wait for some time? Anyway, the doctor does not have a clear answer if and to what extent the medication will help in reducing my symptomps.
Don Roh
Thank you so much for taking the time Jean, ill suggest the boxing and move my question over to the other forum. Be well!
No worries, you might also try Facebook. There are many Parkinson’s groups out there. Just do a search on Parkinson’s. Good luck!
Beth
so my husband had a DAT scan and the comments are: "findings consistent with presynaptic dopaminergic deficiency" what does that mean in layman's terms?
Hi Beth, I am not a medical professional so I cannot comment on your husbands test. What did his neurologist say? I know on my Datscan, I saw that my lit up areas (period shape) of the brain were not like normal scans (e; comma shaped). My report said "abnormal DATSCAN compatible with Parkinson's Disease."
philip a agresta
Sounds like it's a hard diagnosis to make in most people. I've had hand and arm tremor, and some stiffness in my left arm. The neurologist at the time called it essential tremor since i did not have the classic pill rolling with my first finger and my thumb. Now I've battled a distorted sense of smell, had a loss of taste there as well for awhile and never to my knowledge had COVID. I have a DaTSCAN coming up on May 5th, 2022 and am worrying as diagnosing yourself isnt in anyones best interest. Im only 57, i feel young still but some of the symptoms play into my narrative that I'm losing control of my body slowly. If it's not this, then it's something else.
jean mellano
Phillip, good luck to you. It was very apparent to me when I looked at my Datscan and saw the shapes of lit up areas(period vs. comma) and the smaller lit up side controls the left side of my body which is my weaker PD side. Unfortunately, there is no one test to say you have PD. It is really determined by the skills of the neurologist.
Jeanne Leonard
I have been diagnosed with severe Parkinsonism. The neurologist came to this conclusion after an extensive clinical evaluation.This was in September of 2023. My trouble started in 2008 when I was mistakenly diagnosed with bipolar. I found that hard to believe, but I took the neuroleptics because they were giving me the sleep I needed so badly needed.. In 2015, I came down with very severe anxiety and soon after that started I began having an odd feeling in my mouth. Because I did not have any confidence in my psychiatrist. I stopped seeing her and gradually stopped all the meds. I began reading anything I could find . When I came across TD I knew immediately that was what was wrong. The severe anxiety continued and my social life came to an end. My mouth became a constant source of pain and anxiety. In early 2017 I learned about Ingrezza. Within two weeks after starting Ingrezza the severe anxiety stopped abruptly and my mouth started to feel better. I still had unpleasant movements but it was better than before Ingrezza. Fast forward to 2023 I began feeling miserable and my tongue started to be always pushing against the roof of my mouth. That was when I was diagnosed with Parkinsonism. I do not know what is next for me, but things are not looking good. Any suggestions would be appreciated . I am quite confused over the difference between Parkinson’s and Parkinsonism.