Originally Posted by lindylanka

I'd just like to interject on the datscan thing. I was given a datscan nearly 3 years after diagnosis, as the neuro I had then, who had never seen me unmedicated decided he 'could see no signs of parkinsons'. My grandmother had whatever I have, she died in around 1981, never medicated, but had shuffly, slow, masked face appearance for many years, and became very rigid and unable to move at all towards the end, though she was mentally intact. That is the reality of unmedicated end stage. So I know I have what she had, no matter what name is put on it. I had the datescan, without a prior MRI. It took a long time for the results to come, I have never been shown the actual scan, and the report said no signs of Parkinson's Disease.

This really shook me, because sinemet had given me back my life, I had some expression on my face again, could walk alsmot normally, and more importantly the awful chest rigidity that made me unable to breathe easily was gone. It was certainly not perfect, I was falling asleep a lot and my dose always wore off, I have never found a perfect balance that allows me to feel free of parkinsons.

Forgive me if this is boring to those who have heard this before.

I stopped going to most forums, stopped trying to find out more. In a lot of ways I was just shell shocked by this withdrawal of diagnosis. Let me say here that I had spent seven years prior to diagnosis trying to find out what was wrong with me, because I knew there was something, I was not neurotic, or imagining it, as some doctors tried to say when their long series of tests all came back negative....... I was devastated by it. And they were trying to stop the ONLY medication that had made a difference. I was, and still am on a very low dose, have never wanted to up it, and am happy that it is not managing all my symptoms, because the ones it does help are the crucial ones for me.

To cut a long story short, I was taken into hospital for a washout, and by day five all the PD symptoms I had before diagnosis returned, my new neurologist got to see what I looked like under the meds, and despite the fact that I do not and never did have much tremor other than on the lips, this doctor sent me home, and I went to his clinic a few days later, medicated and functional.

The crucial reason that I am telling this story, is that this neuro, who is very knowledgeable and has spent a life time observing PD, said that there is about a six percent failure of Datscan to identify PD. This is not the difference between those who do or don't have it. And this is given that nobody really has a clear definition of PD, we are all lumped into this bracket.

My parkinson's nurse is of the opinion that it does not really matter what name is put to it, it falls within the PD range, what matters is that I have some quality of life, which I clearly do not have without this medication. I worry about what happens if I start to experience dyskinsias, severlely. I worry about not being on the steady regime I now have, I worry that my neuro will retire and I will be at the mercy of someone who has not seen the evolution of PD treatment, someone who will not see PD in me BECAUSE my medication is working.... I am seven and a half years into treatment, am taking a third less sinemet than I was in the early couple of years, because I take entacapone, and I know that I have progressed some. But in those years I have single handedly brought up my son, who is now just about to enter the jobs market, and who has had to struggle through education with his own neurological issues. I could not have managed that untreated, and more than the other more physical issues, the awful masked face that I have unmedicated would have led to me being miunderstood and misread at every turn in some of the battles I had to fight on his behalf, education being every bit as muddled a part of the public sector as medicine.

Do I think there can be better treatments, YES
Do I think that medicine knows what it is looking at, NO
Do I think that it is worth fighting to ensure that other people, down the line ar going to get a better deal than PwP today, Yes

Do I think it is worth us bickering, or making divisions between PwP, NO

We are all in this together, no matter what eventual name they put to our varying conditions. We know there are subtypes, we know they may turn out to have differing causes, and treatments. We know that as yet there are no treatments that halt or reverse what is happening to us. And we know that what treatments are there are ALL flawed.

We also know that the best thing we can do is be very very well informed, and take note of some of the wisdom that Indigo talks of, and find out what is best for us personally.

We are all on the same page really............ we may not agree on everything, and each of us is coming from our own unique experience of what it is like to be under the PD umbrella.

Lindy