Wow, I too have been following this thread. It seems like a LOT of PWP, or at least, folks who have been told for years they have PD, are told they do NOT when the DaT scan is done. Just on this forum alone, and thanks all for sharing with us, we have lindylanka, evonne, and harley (27 years of PD meds now being told she doesn't have PD).

What does this tell us? What are the stats for how many PWP go in for the scan and come out with their PD dx negated by the results? And at what "stage" of PD were they supposedly in?

Like Paula said long ago, it's not just about dopamine. I dont' know what it is about, but this tells me that we really have no idea what causes these symptoms. Dopamine may relieve some symptoms, for some people, for some of the time, but......... I have no doubt that if I popped one of my husband's sinemet, I would "feel better" too. For awhile. We might want to reconsider the almost total reliance we place on the "responsive to sinemet" test.

Think of what we would learn if, in addition to the DaT scan, docs ordered MRIs of every patient in whom they suspect PD. The MRIs would be scrutinized for irregularity but especially compression. Given that 78% of the 20 PWP had compression of the same blood vessel in the same location in Jannetta's initial study, I would think the medical community would be jumping all over that angle.

If more and more DaT scans are done in PWP and show negative for PD, maybe that will move us towards a more open-to-cause-of-symptoms direction.

Does anyone know the stats of the scan for different stages of PD (or rather, different severity of symptoms)? If, for example, the scan claims 100% of the folks who show symptoms of Braak stage 5 have PD, but a far less number for those who show symptoms of Braak stage 1 or 2, that would be telling as well.

Thank you, evonne, for sharing this experience with all of us.

Ginnie,

Thanks for your reply. This sure has been a long road! I just wish that my diagnosis could be crystal clear. I am beginnig to realize that day might never come. I will settle and accept that the meds work to alleviate my symptoms for the most part. As for the snow, we did get at least 8 inches or so in less than 24 hours. That was probably the most significant snow of the season. A little later than usual this year. You just never know what will happen with the weather here in the great northwest!

Laura,

Yes, I was hoping that the DaTscan results would go along with the fact that I am responding to Sinemet. It would have just made things a little more clear cut for me. Dopa Responsive Dystonia is one of the possible diagnosis' that have been brought up as well. You asked why the diagnosis was being questioned in the first place. I started having symptoms back in 2007. From a very early point, I have had symptoms on both sides of my body. Just like Lindy, I have been told by some doctors that I have cogwheel rigidity and others have not felt it. I have seen four different neuros and two thought ET and two thought PD was likely. My neurologist thought that I should be seeing more improvement from taking the Sinemet. When I saw the new MDS that joined the practice, she did the levodopa challenge and found that I was very responsive to the Sinemet. Basically, the DaT was done to see if it showed PD. I honestly thought it would come back showing PD. I was a little shocked that it didn't. Instead of giving me peace of mind, it just reminded me of how complicated this whole road to diagnosis can be for some of us. As far as my doctor questioning the scan results, I am kind of glad that she didn't just accept that as gold and leave me hanging. She is trusting her instinct and what she has seen in me and she isn't giving up on finding the correct diagnosis. I would be really discouraged if she just threw her hands up.


Lindy,

You have no idea how this one paragraph you wrote affected me!

"Taken off meds by day five I returned to my pre-diagnosis, pre-treatment self with a bit more. As rigidity and slowness are my thing, it was not fun. A bevy of doctors poked and prodded me, tested my reflexes,took me through the usual neuro stuff, and some of them thought PD some of them didn't, some of them felt cog-wheeling some of them didn't. It was funny seeing it happen, made me realise that so much of it is subjective. A good neuro though has an instinct for what he is looking for, he isn't looking for the textbook description, he is looking for something familiar that he recognises."

I could have written this! I have skipped meds and also gone days without them just to see if I really needed the meds. Every single time, I go back to the meds because life is just too miserable without them! I do believe that the two neuros that I currently see have the instinct that you are referring to. They know that there is something going on with me, even though they can't say with 100% certainty that I have PD. They aren't ready to close the book on me. My regular neuro has the same philosophy as your PD nurse. Quality of life is what is important. It's strange though, because even though he makes that clear to me, I feel like I am the one that wants the crystal clear diagnosis. I guess I just need to accept that might not happen for awhile, or ever. Thanks for sharing your story. It is unfortunate that we have had to deal with all this, but is comforting to know that we aren't alone.

Lurking,

I share your discouragement in the lack of accurate testing for proper diagnosis. PD is hard because they don't even know for sure the exact cause. It makes me feel that it will be a long time before a cure is found. It's hard to find a cure when the cause is not determined.

Dr. Janetta's work is fairly new to me. I haven't been checking into this forum as regularly as I once did. It is very interesting to me. I will read more about it in the next few days.

[I was really hoping your test would give you an answer. maybe your doctor going forward with another is a good idea. Nobody likes to be in limbo and not have a diaganosis. I will keep you in my prayers, along with the others on the PD site. Ever since my neighbor had this, I have such empathy for those who suffer with it. It had a powerful impact on me when I was growing up. ginnie

thanks for posting your experience. shows how complicated pd is.
i guess the value to you is future scans may show changes that might help researchers if anyone did a project analyzing lots of scans. might point to alternate causes.

Evonne, I was a little more than shocked when mine came back negative. I had thrown myself into making the best of a not ideal situation, and made many friends who are here on this site. In other words I suppose I had come to terms with having PD, especially as the medication was the only thing that had made a difference (that is other than the great on-line company!).

Trying to do without sinemet returned me to a state which was the one I had gone to be treated for in the first place!

You are right though, it helps that someone has gone through or even is going through something very similar, it kind of affirms that it is alright to trust yourself. Though I would much rather that your condition was gone than that you had a negative scan......

I had a neuro who had been reading the journals that year on sinemet addicts and had convinced himself that I would be taking hundreds of the things in no time . He had a thing about trying to convince me that i must had had treatment for depression, and asked, every appointment, about a list of drugs as long as my arm, none of which I had ever taken! I asked for a 2nd opinion!

Keep trusting yourself on this and work with the doctors you trust, medicine can be as bewildered as patients are, they have not really made a huge amount of headway into any of the long term conditions yet, nearly everything is palliative.

Lurking,

"Think of what we would learn if, in addition to the DaT scan, docs ordered MRIs of every patient in whom they suspect PD. The MRIs would be scrutinized for irregularity but especially compression."

I read somewhere that MRI and Datscan should both be done because the area of the SN is so small, but do not know how true this is. I only noticed it because I know I only ever had datscan. Someone else may be able to confirm.

Years ago someone asked a question about cervical ribs, I have one on the right, and am more affected on that side. Neuro assured me no correlation with PD or my symptoms, but wonder nerves and blood vessel compression sometimes. Hmm.

I still think they have a lot to learn

What insurance company did you deal with and how did you get them to agree to pay? My insurance told me 7 months after having a datscan they consider it experimental/investigational and they are not paying :-( I'm hoping to learn something that can help me deal with Blue Cross/Anthem. Do you have any suggestions?

I had mine fully covered by Horizon BC/BS (NJ). It did take a long time, though, to settle the radiologist's invoice because the CPT billing code keeps changing. The radiologist didn't want to wait any longer and started billing me ($1,700). I had to go to General Electric directly to obtain the new CPT code for the radiologist. It eventually worked out ok and I was fully covered. I don't believe it is considered experitmental anymore.

You are in my thoughts and prayers. ginnie

This has been an unreal read, i was wondering myself about how it all works with DX and various dr's. Has confirmed alot of my suspicions Dr's dont really seem to know much about it all yet. Thankyou to EVERYone who posted here, especially Evonne, its good to know im not alone in this, rollercoaster chase for a diagnosis. Its just not the way we grow up, i mean we expect, trust in modern medicine and diagnostic testing yet every year it seems to me more of a 'sham' to keep the peace, like keep us thinking most things are treatable and its very rare not to be able to have a definite cause found. Which i know all too well the terrible feeling of isolation of being one of the 'rare' cases, which im seeing isnt the case. Ive never forgotten a lecture in sociology class that went something like, people expect people to be working, contributing to society, and if they are sick, they are 'expected' to be getting better, trying to return to contributing. Some primitive unconcious instinct, mingled with the absurd expectation that contributing to society is working a 9-5 paid job (even if its doing something destructive to the planet), which is bollocks. Yet its there, how often do we wish we could say' I have...' and people would be all like, oh yeah i totally understand. It always struck me that is the underlying reason i have fought so long to get a label. The label shouldnt matter though, only that something is helping or isnt, quality of life. I wish more Dr's thought that way. <3 Thankyou.