Day Scan

[Jamesjcm]

I had the radioactive Dat scan to confirm a diagnosis of early onset of PD. I just turned 47. I've had the symptoms for over a year and a half.

Typically how many diagnosed with PD don't have a test to verify and wait and see?

sad,

curious,

Jay

[Hidden]

Hope this answers your question

pdf.org/en/science_news/rel...

Q: I have Parkinson's / I am experiencing symptoms of Parkinson's. Should I get a DaTscan?

Dr. Beck: Likely no. Individuals who respond well to Parkinson's medication therapy and who have been diagnosed for many years will likely have an accurate diagnosis of Parkinson's disease. A DaTscan may be useful for those whose diagnosis is clinically uncertain or who have failed to respond well to common Parkinson's medication therapy. Every case of Parkinson's disease is different, so it is important to discuss it with your doctor.

[JohnPepper]

Hi James. Even the DAT scan is not 100% accurate. There is NO Definite diagnosis for Pd. It is like a moving target.

The thing with Pd is that you must take action as soon as you can because the longer you leave it the worse it gets.

I have found that fast walking has reversed most of my movement symptoms. If you look at my website it will tell you all about it - reverseparkinsons.net - Alternatively you can email me at [e-mail]. Don't sit back and do nothing.

Good luck

John

[Hidden in reply to JohnPepper]

I know this may sound "going off tangent" sorry, I often wondered (or convinced?) if that's due to the improved circulation hence some positive impact on whatever area / with some unknown mechanism going on? I certainly think I feel generally better after I moved around even if it's so slow. If you could manage any "vigorous" exercise it would be much better, I honestly do not know the answer. As for DAT scan, my neuro says, it may lit up even when you haven't got PD..apparently, the same goes with AD.

[allofatremor in reply to JohnPepper]

Hi Mr John Pepper, Could I ask you for a little advice please? I'ts my OH that has PD he is 68yrs Dx 3yrs ago, told he had middle stage PD. He was told when Dx to make the most of the next 5 yrs of which 3 have passed us by now.

When first Dx he had wicked tremor, when hes meds eventaully got sorted like 12-18months on with trial and error the tremor disappreared. He is doing ok, and follows your advice regarding waking every other day, some times every day??? not sure why it has to be every other day???

What I wanted to ask you is this - he swings his arms when doing simple things like making a cup of tea, he lifts his arm and hand so high when stirring the tea bag that he almost misses the cup when he brings his hand back down, (its like he's conducting an orchrestra with one hand) he seems to swing his arms and torso very unusually when trying to do simple tasks its hard to explain. Is this his meds causing this? or his parkinsons getting worse? or both? and what part of daily excercising can help with this? or is it just fast walking for all PD symptoms? regards AOAT

[JohnPepper in reply to allofatremor]

Hi AOAT. I am not a doctor so am giving my reply as a layman.

It sounds to me like dyskinesia, which is a side effect of levodopa medication.

He can try to find the dosage, which gives him acceptable movement, but no dyskinesia. It has to be trial and error. Try a little at a time. Best do so with the doctor's knowledge.

You ask why not every day? If he is walking as fast as he can he could injure his muscles, which need a day to recover from high intensity exercise. If he isn't walking as fast as he is able to, then he is wasting his time.

Good luck

John

[allofatremor in reply to JohnPepper]

Thank you for that John, It makes a lot of sense, I will explain this to him, and I'm sure is will take it on board. I'll be with him every step of the way, best regards John 💙

[JohnPepper in reply to allofatremor]

Hi allofatremor. It was my pleasure.

John

[movinngroovin]

I've had PD for almost 20 years. It started when I was 45 (or earlier).

Had DBS -one side last November and the other side in April

Only question I have asked is "Why didn't I do it sooner?"

No test to identify PD only one to rule out a more serious illness-outside of seriously high priced nuclear scan.

[Snugglejaz in reply to movinngroovin]

Hi, I am new to these forums. My husband has PD' diagnosed at age 42 (13 years ago). We are in the process of trying to get him in for DBS through the public health system. Your comment that 'just wish you had done it sooner' I assume is because you benefited from it greatly. Would you mind maybe listing some of the benefits you got from having it done. Appreciate your time.

[movinngroovin in reply to Snugglejaz]

I was 45 when I got PD. Benefits are: no tremor, no meds (unusual I hear), less rigidity, pain, and muscle tension, no more bradykinesia... I go to the gym daily. I am a Medtronic Ambassador & would love to talk further...

[Jamesjcm in reply to movinngroovin]

Benefits to having PD??? I'm confused.

[movinngroovin in reply to Jamesjcm]

Benefits to having DBS

[Chris0846 in reply to movinngroovin]

Hi, I too had DBS last Oct and I like you take no meds. Both sides were done at the same time and I also have the Medtronic device which I control to a certain degree but I am in need of an adjustment. Contact me if you want to know more!!

[movinngroovin in reply to Chris0846]

Hooray for DBS!!

I am a Medtronic Ambassador. Have you considered becoming one?

[Chris0846 in reply to movinngroovin]

No I have not because I don't know anything about it or what it entails! Like I said I'm still trying to work out all the kinks but I certainly would recommend the surgery and would do it again in a heartbeat, kinks and all! I hope I won't have to take any meds for a time to come!

[movinngroovin in reply to Chris0846]

We are in the minority apparently..

[twotutts42]

I had a DAT scan to determine if I had Parkinsons. I was told 100% that I had idiopathic Parkinsons However I so seem bit to tolerate the drugs zxx

[Jamesjcm in reply to twotutts42]

What does idiopathic mean?

[twotutts42]

It means reason or cause not known.

[Bobkat]

Hi Jay,

The doctors would not commit to a Parkinson's diagnosis for my husband instead saying that he had Parkinsonian like symptoms. He does not respond to carbodopa-levodopa; so that, he is atypical. His tremor has become so disabling that he wants deep brain surgery. I was not willing to go along with this until we knew for sure. I had the best insurance that I could get in Mass as a retired teacher. The DAT test is expensive and the insurance company would not approve it as they say it is still in the early stages and they felt the doctor's observations were sufficient even though the doctor wanted the test also.

I wrote an appeal as well as his neurologist for reconsideration but both appeals were denied. I ended up changing my insurance to a a company that would approve the test but it is very cumbersome to use since I must get pre-approval for every appointment he has.

He has a lot - besides Parkinson's he has cardiac and other problems.

In short many people cannot afford to pay out of pocket for this test and not alll insurance companies are willing to cover it.

Kathy

[Jamesjcm in reply to Bobkat]

Kathy, I was unaware of its expense. Because of a TBI from an auto accident I'm on medicaid which did not blink at it.

[Chris0846 in reply to Bobkat]

Thank the lord I live in Ontario, everything was covered by Ohip!

[honeycombe3]

Hi Jay,

You ask how many people have DAT scan confirmation of their PD. Without access to data none of us is in a position to know. Since you talk about the cost of tests I assume you are not in UK which I am. However one way of getting state of the art tests, assessments & treatments wherever you live is to volunteer for clinical trials. What is on offer depends on meeting criteria for each trial & on what you are prepared to undergo. I have had several scans including a 2.5hr functional MRI scan which measures tiny metabolic changes taking place in an active area of the brain. It is easy to find trials using sites such as Fox TrialFinder or by googling PD clinical trials. I am a 67yr old female dxd for 12 yrs & doing well at present.