Hi Laura,
i did have a similar experience to yours in that i got diagnosed in spring 03, and was v glad to finally have a name for what was wrong with me and a drug that worked, then was moved to a different neuro, who looked at me and said 'i see no signs of parkinsons' - initially i thought that he was referring to sinemet being effective, but another appointment down the line and he repeated this and said that he thought he would have to return me to a fibro dx. to be honest i was absolutely distraught by this, as i had for the first time in about 8 years been feeling properly mobile, and really feared that they would stop prescribing pd medications for me. it took nearly two years to get this cleared up, i did have the scan and the results came back negative, though i never actually saw the scan itself, and it was over 2 months late in being returned...eventually i insisted on a second opinion - went into hospital for them to observe me off meds for 2 weeks, after 5 days was discharged, pd was breaking out all over the place! i saw the new neuro in his clinic - he told me that contrary to most info on scans they were not 100% accurate, around 6% were false negative, and I probably fell into this category. nobody has disputed the dx since, though my records carry the words 'possible parkinsons disease'. i had an apomorphine challenge test too that was inconclusive, due to severe nausea and sleepiness - a lot depends on timing with that one, and by the time they got to me approx 20 mins late, the effect had worn off, it is v short lived... the best dx method is still clinical observation by an experienced neuro......

like you i am atypical, and had rather a long route to dx, we are the people who do not fit the mould, but nevertheless fit into the pd spectrum somehow.

none of the tests are infallible - my pd nurse specialist who last year reviewed my meds and got me the best results so far said at the end of the day if the medication gives you a better quality of life the name of what you have is less important, especially with pd, which she feels will eventually wind up being labelled as several different conditions, much more specific, in addition to the several different ones there already, and that there is a huge amount more to be done on understanding the patient experience!

well, we know about that, don't we, lol, so try not to be anxious, and bear with the drs while they get their act together!

the tongue test thing was most probably to rule out als, and not anything to do with pd.

good luck with all of it, it can be a long and winding road to what you need to know, and sometimes i think the neuros move even slower than we do

best wishes
lindy