accidentally deleted better post, apologies for scrappy post below.....

my neuro continued to treat me, asked me whether sinemet helped, I said yes. it still does. his colleagues were not interested in me, only in looking at scan results. he looked at me and calls it PD..........

recent posts about dopa-responsive parkinsonism might be part of the answer

my datscan experience; went in, had injection, plus a liquid iodine preparation, got there well in time as I was told it was time sensitive. scan was done about half hour late, took 40 mins and my head was held in some kind of plastic restraint, was sent home. scan done by two technicians. results should have come in 2 weeks, only got them after 2 months and some pressure on hospital. would love to know what it was like for others.

some thoughts; don't know if this is true, was told that a prior MRI is needed, as the target is so small. unless it was all done in that session I have not had one done.

when results are processed there is digital enhancement, can this be a cause for false negatives, or indeed false positives. it would help patients if they understood exactly what this process is, how the results are arrived at. have looked for this information, if anyone knows, I would be interested....

is ANYTHING 100% accurate?

is parkinson a spectrum as most of us seem to believe - then why would there not be brain differences, and differing results......

maybe this scan is not everything it is said to be. other things are painted in rosy colours, but we know that there are downsides, is this the same?

my neuro said 6% false negatives, are there also false positive, scan failures, other anomalies? is there postmortem data that backs up accuracy, there hardly seems time for that.

in the uk datscan is often used only when there is a question mark over diagnosis. cost dictates this. but some areas nearly everyone seems to be scanned. how might this affect data?

do people mostly have datscan prior to going on medication? I had been on ldopa for 2-3 years. Harley for a very long time. does this affect results?

do doctors keep data on this, do the datscan people...........? or is it just seen
as a given that a negative definitively means no Pd....... do all doctors look at the scan, or do they look at the results? i have never seen mine, did the neuro who ordered it see it? hard to know......

i guess we all have questions that keep hunting in our minds, especially those of us who haven't a proper name for what we are living with.....