Living with Parkinson's Disease - Meet others & come say hi

Hello, my name is Chris and I am 66 years old and had a DAT scan yesterday, and got the results today on my chart. Would love some help understanding the results.

Hello, my name is Chris and I am 66 years old and had a DAT scan yesterday, and got the results today on my chart. Would love some help understanding the results.

Hello @chrissymc

I would like to join Lisa, @lisalucier, in welcoming you to the PD support group on Mayo Clinic Connect. As Lisa said, on Connect, we are patients like you who are here to support and encourage each other; we aren't medical professionals and therefore aren't qualified to interpret medical test results. I would encourage you to contact your doctor's office to discuss the results of the DAT scan.

In the meantime, I wonder what symptoms you were having that led to this scan. When I was first diagnosed, I was having an unsteady gait, balance problems, and a very soft voice. When I began treatment with carbidopa/levodopa, many of those symptoms improved.

Share as you are comfortable, a little about your most bothersome symptoms.

Hi @chrissymc - welcome to Mayo Clinic Connect.
We are not doctors and don't have medical training, but perhaps some of the members in the Parkinson's disease support group can share what they've learned from their own experiences with their doctors and their reading and research.

Here's some Mayo Clinic information on PD diagnosis, including a description of DAT scans:

Parkinson's disease: Diagnosis https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/diagnosis-treatment/drc-20376062.

You may also find this Connect discussion specifically on DAT scans useful:

- DAT scan for Parkinsons disease usefulness and cost https://connect.mayoclinic.org/discussion/dat-scan-for-parkinsons-disease-usefulness-and-cost/

Have you been experiencing symptoms that led your doctor to order this scan? If so, will you share more about what symptoms you've had?

@hopeful33250 I have had many symptoms over the years that progressively have gotten worse. The one that brought me to the doctors office recently was at the urging of my daughter because of my tremors, face hands, etc., and my poor balance issues. I fell in the tub last year. But I’ve had the no sense of smell, constipation, big time, memory issues, the inability to express myself the way I think in my head for it to come out my mouth that way. So cognitive issues. I also have Sjogren’s disease, diabetes, and a host of other elements. I live with chronic pain so those things I attributed to arthritis. I suffer from depression so many things that I’ve had over the last couple of decades, but they all were like they seemed to me to be not related at the time. I even said to my husband at one point if I die, please have an autopsy done so that you can know what did it because I’m convinced that it’s one thing and not all these different things and I believe they’re all connected. I thank you for any information that you provide. I know that you cant interpret testing or anything like that. But any insight that you can give to me I would appreciate. Thanks, Chris.

@lisalucier hi Lisa, I wanted to let you know that I really appreciate the information that you have sent. I haven’t had the opportunity today to read any of it. That’s why I haven’t replied before now. But I wanted to let you know that I did just make a reply to hopeful33250 about symptoms that I’ve been having. I will get back to you as soon as I’ve read the info. Which I will do today. Thank you for your help.

@chrissymc

I am sorry ot hear of the many physical, emotional, and cognitive symptoms you have experienced. You have mentioned a lot of chronic health issues, and I understand how the symptoms from each one can cause confusion when you are looking for a diagnosis and treatment.

Has your doctor contacted you yet about the results of DAT scan? This is an appropriate test to see if your brain is producing dopamine. I understand there is also a skin biopsy test that can detect PD. Not every doctor believes that it is an accurate test, though.

I was diagnosed a number of years ago, in a different way. The neurologist that I saw did other tests (MRI of the brain, EMG, etc.) to rule out other causes for my symptoms and then put me on a low dose of carbidopa/levodopa. When I started taking the meds, I had significant symptom relief. So, it was determined that I had PD. It is a rather unusual way to come about a diagnosis, but it did work well for me.

I look forward to hearing from you again as you search for a diagnosis and when you hear back about the results of the DAT scan.

@chrissymc

I am sorry ot hear of the many physical, emotional, and cognitive symptoms you have experienced. You have mentioned a lot of chronic health issues, and I understand how the symptoms from each one can cause confusion when you are looking for a diagnosis and treatment.

Has your doctor contacted you yet about the results of DAT scan? This is an appropriate test to see if your brain is producing dopamine. I understand there is also a skin biopsy test that can detect PD. Not every doctor believes that it is an accurate test, though.

I was diagnosed a number of years ago, in a different way. The neurologist that I saw did other tests (MRI of the brain, EMG, etc.) to rule out other causes for my symptoms and then put me on a low dose of carbidopa/levodopa. When I started taking the meds, I had significant symptom relief. So, it was determined that I had PD. It is a rather unusual way to come about a diagnosis, but it did work well for me.

I look forward to hearing from you again as you search for a diagnosis and when you hear back about the results of the DAT scan.

@hopeful33250 my doctor, wrote this to me today.
Hi Chris,

The scan can tell how much dopamine your brain is producing. Based on your scan, your brain is not producing enough dopamine, which is unfortunately concerning for Parkinson's disease. The Abilify blocks dopamine and makes your symptoms worse, but it does not cause an abnormal scan. Let's talk about this more at your upcoming appointment and we can go over everything at that time.

@chrissymc
I appreciate the update! It sounds like you are on the right road. I look forward to hearing from you after you meet with the doctor. In the meantime, if you have any questions or concerns, please post them.