Hi all! I’m currently being evaluated for PD. I admit I do seem to have some of the classic signs (stiff right wrist, slight lightheadedness, and a tremor that only shows itself when I exercise) but they are very subtle. My Neurologist said he could almost tell by looking at me when he walked in (facial expression and reduced eye blink rate) and after an hour long exam he’s 90% sure that’s what I have.
Next week I go in for a DaTscan. Normally a person would hope and pray the scan would be negative. BUT everything I’ve been reading from Dr. Google points to a negative actually meaning I might have something similar to PD but WORSE!!! (MSA, ALS, etc…) All this uncertainty has left me a nervous wreck. Not sure what to think… Thoughts???
Hi Hardisk, and welcome to the Forum.
We noticed it was your first post, so we wanted to say hi and make sure you’re aware of the resources available on the website (Parkinsons.org.uk) as well as our free and confidential helpline at 0808 800 0303. You’re sure to get some supportive and helpful feedback from our lovely community, but we wanted you to be aware of all the tools available to you as well.
Hello Hardisk I wish you the strength to deal with whatever the scan tells you. In my husbands case the neurologist said he had PD just by seeing him in the waiting room. They get to recognise it from years of experience. But there was still some doubt in our minds as his symptoms were all about a significant tremor. So a DAT scan result was almost reassuring and opened the door for him getting a DBS operation which has controlled the tremor and saved his life as he could not have gone on as he was. I feel for you but a result is easier to live with than uncertainty and will help you plan for the future. It helps if you take charge of your health with full knowledge and push for the help that you need. This is the first step. All the best.
I had my DaTScan in January and got the results two months later in March. Like you it was uncertain whether I had Parkinson’s so I wasn’t sure how the result would come back. When the result came back positive I was initially quite shocked because I wasn’t expecting it. However I now have a far more positive reaction because
- I have an explanation for all my symptoms
- I have a known enemy and can take some actions of my own like an exercise regime. I am not on any medications yet but these will be available as my symptoms get worse.
- I have heard so many positive stories of people who have had Parkinson’s for many years and still not letting Parkinson’s interfere with their lives.
I hope all goes well for you
In your position I would be reading up on PD as fast as I could so that, if PD is confirmed by he Datscan, I am in pole position to ask all the right questions about it. If PD is not confirmed prepare yourself to bone up on the next suggestion they come up with.
If PD is confirmed you will probably find yourself in a long, revolving queue to have your treatment identified and then adjusted over time until they get a positive response to a treatment that seems to work for you… It can take some time to get the best match for your particular circumstances and, as you find out when you read people’s problems on this web site, help is not always a simple phone call away. It pays to be well briefed and ready with your questions. Best of luck. Hope this helps! JCPB
DaTSCAN IS indicated in patients with clinically uncertain parkinsonian study can exclude PD, but an abnormal result could represent either. VP or PD .
Thanks for the info i will try to figure out for more.
Did you get your DaTSCAN?
I hope you get the answers you need.
I am new on here and yours was the first post i read. Im at the beginning of the journey, just been refferred to neurologist… been waiting almost 4 months now for an apt.
Did you get your Datscan?
Hope it was ok for you. Got your result yet?
Im due to get mine 5th Oct then wait for results