Hi there,

It's great to see someone who writes longer posts than I do...welcome.

The diagnostic process truly is the worst part; for me, the advent of a diagnosis that made sense was a huge relief. At least initially, until the grief took hold. Hang in there.

Although not on levodopa myself, it is my understanding that feeling a dramatic and immediate improvement further confirms a PD hypothesis. So, given your clinical description, I am surprised right along with you. Perhaps you're simply the exception that proves the rule. (Don't you feel special?) One thing that comes to mind is the severe nausea you mention. Is it so severe that you're vomiting up the meds? That would explain their lack of efficacy.

The SPECT scan should offer important insight, and possibly a certain peace of mind. With clearly asymmetrical symptoms, the dopamine uptake distribution (assuming PD dx is correct) should similarly be asymmetrical. Mine was. Your MDS should also be able to tell you how your dopamine producing cell depletion (percentage) compares with others. (You might have to press for this, especially if the number is daunting.) My understanding is that the asymmetricality of my images "ruled out" MSA and other scarier stuff than PD. So ask your doc about this when reviewing the results.

If it walks like PD and talks like PD--and if all the other things that have crossover symptoms with PD have been ruled out--then it probably is PD. Or, not being a doctor but simply a patient, it may be most helpful to think of it as such until another hypothesis emerges as more likely. I can tell you that I drove myself (and my darling) completely bonkers last winter re: the PD versus P+ question. Please keep in mind that, as uncommon as YOPD is, P+ syndromes are even more so...and hence, very unlikely.

Like you I had some cognitive symptoms that worried me. (I suspected Lewy Body Dementia.) Yet I was reassured by not one but three MDSs that (1) the stress/anxiety of not knowing what was going on and lack of restful sleep were likely the culprits and (2) cognitive changes are not uncommon with PD and do not necessarily indicate P+. But I see where you are going with this, having been there. All I can say is to breathe through this awful waiting period. Now would be a great time to start yoga. The SPECT scan results really should help.

Regarding the autonomic system dysfunction, I do have some of that. While early AS dysfunction can point to P+, I am assured that it also can be part of garden variety PD.

Regarding hope, there's always reason. Hope that whatever it is you WILL have the strength and support and optimism (on good days at least) to deal with it. Better yet, know that you will, and hope that you will have enough leftover to take care of those you love. I know your question was more medical, but you get what you get on this forum sometimes! This is something I wish someone had said to me..

Finally, if you haven't visited parkinsons-support-chat.org please do. Run by John and Penny Teem--both of whom have PD--this chat is especially geared toward newbies. It has been an invaluable part of my journey from something approaching hysteria last winter to something approaching peace this summer. Go any evening between 8-12 EST. (If you want to know how I feel about Penny and the service she and her husband provide to PWP, read the poem I wrote for her, which is posted on my fledgling blog at their site.)

Please let us know how you are in the coming weeks. You are not alone.

Rose