I was diagnosed recently with Parkinson’s. My mother, her brother and niece also had Parkinson’s so I am familiar with the symptoms and have no doubt about the diagnosis. I have been offered a Datscan but I am unsure whether there is any value in going ahead with this. The consultant said it would make no difference to the diagnosis. So I am wondering if there is anything I would gain from having the scan.
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Hello Gregcoops … I had both a Datscan [11 months ago] which was positive & a Brain Mri scan that was normal for a man of my age at the time [69]. I have seen the digital copy of my Datscan which I am told by the Neurologist is very typical for Parkinson’s. I actually have Atypical Parkinson’s.
None of my relations have had Parkinson’s. I take Sinemet which makes a difference to the symptoms I have.
My symptoms are mostly fairly mild & nothing like one would expect of Parkinson’s.
I am pleased I had a Datscan as I feel more comfortable with the diagnosis. A sort of confirmation that I have Parkinson’s. Yes, I know that one can have Parkinson’s but have a normal Datscan.
I do except that our symptoms are treated by Parkinson’s medication whether we have a positive or negative Datscan.
Another advantage of having a Datscan is that in the future I might have another Datscan to see if my condition has worsened / is different as the symptoms get worse.
Does that all make any sense?
If I were you I would have the Datscan, it is interesting & I think fairly harmless.
I also have Neuropathy [confirmed by another test]. Up to 55% of Parkinson’s sufferers have Neuropathy.
Any questions please ask.
Best wishes
Steve2
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Getting Diagnosed | Parkinson’s Foundation
It is important to know that a negative DaTscan does not rule out PD, especially early in the disease, but a positive DaTscan can help confirm it.
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Thanks Steve2, that’s helpful. I have been hesitating because (a) I was unsure if it would add anything with practicable value over and above my clinical diagnosis. (b) not wanting to use NHS resources unnecessarily. The consultant didn’t seem to think it was necessary but said I could have one if I really wanted.
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Hello Gregpoops … By having a Datscan I think it increases the understanding of Parkinson’s disease. It is the only fairly reliable indicator for Parkinson’s. Everything else is opinion, guesswork & trial & error.
My original Neorologist who arranged my Datscan & Brain scan told me that he thought that my taking any Parkinson’s medication was a waist of time, but I could try if I wanted. I wanted to try & Madopar first & then Ropinirole did nothing for me. But Sinemet does seem to have made a difference. The Sinemet was prescribed by my Parkinson’s nurse after the Neurologist had returned home leaving the NHS,
Best of luck.
Steve2
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Wow that’s a pretty gloomy view of the effectiveness of medication.
Hello again Gregcoops … I have been diagnosed with “Atypical Parkinson’s”. As it’s name indicates my Parkinson’s isn’t “typical”. My Neurologist did say that Atypical Parkinson’s is the worst Parkinson’s you can have as you can’t treat it.
My Armenian Neurologist then left for home leaving the NHS & my experienced, highly thought of Parkinson’s Nurse prescribed Sinemet [I had been on no medication since stopping Ropinirole]. His opinion was that Sinemet slows the onset of my version of Parkinson’s disease.
The standard Parkinson’s does respond well to the dopamine replacement medication like Madopar.
Normal Parkinson’s patients often have the tremor & shuffling gait. I do not really have a tremor but can’t walk. I also freeze when I stand still for more than a minute or two.
It is a coin toss as to which is worse.
I also don’t sleep well & suffer from fatigue & an annoying dry mouth.
What symptoms do you “enjoy” ?
Steve2
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