Dear Evonne,
Every question that you have set went through my head too, around 2005. There were questions over my dx despite the fact that l-dopa had given me back some quality of life after losing it to slowly progressing bradykinesia and rigidity and an inner shakiness that was hard to explain. I had the datscan done, and it, or some bit of paper to be precise came back with a negative for PD. I was never shown the actual scan. I was devastated, as it was implied that I was some kind of sinemet junkie abusing both hospital resources and medication. I had been very, very grateful for a diagnosis, as it ended a lot of fear, and brought a lot of improvement.

To me sinemet represented the only medication that had helped in nearly ten years of trying to find out why my functionality was going down the pan. I had been taking it for a little over two years, and it had made a visible difference, enough for friends and family to remark on it. When I talked to my GP, who had also been able to observe the positive change in me, she referred me to the top specialist in the region, and eventually I was taken into hospital and taken off medication. In five days I deteriorated rapidly, being unable to function, which was where I was getting to prior to medication. I was looked at by several neuros, and last of all by the top man, who had never seen me before. He discharged me, told me to go back onto medication, and see him the following week. When I did he explained that datscan is not 100% accurate, that there are other parts of the brain than SN that can be affected, that there was a 6% false negative rate, and from that day on he referred to my condition as 'your PD'. He was very frank in saying that as yet PD is not properly understood. I remain a 'sinemet junkie', my parkinsons nurse got me onto entacapone three years ago, and I got a smile back which had been slowly disappearing again, as well as some walking ability. I have variously been described as atypical, probable, possible, etc parkinsons, and the last time I saw a neuro, it was a completely new person, never seen me before who pronounced, and made sure to send me a letter with the description 'mild parkinsonism'. I wish that was accurate, but the truth is I was well medicated and never had the tremor he was looking for anyway. What I look like unmedicated is rarely seen by anyone but my son, who still lives at home. I get around 20 minutes in the morning before my un-namable sinemet responsive affliction grabs me!

Your story moved me, because I have been in your place, with my mind hunting every which way for some kind of explanation, an answer. I know it isn't in many other disorders. I have been tested, poked and prodded, xrayed, and medicated for them, with no change. I have been told it is all in my head too...... and for a while it was implied that I had a conversion disorder. That was the worst - the implication that somehow I had 'chosen' to have this intractable set of problems! The neuro who does accept that I have some kind of PD did so on the basis that though I did not recognise it at all at the time, I also had demonstrable postural instability, easily detected by him, and cogwheeling, the first is now quite a big problem for me, I fall quite often...

My Parkinson nurse practitioner has helped me more than most. She recognized that far from being over medicated, actually I was under medicated, she watched me going 'off' in my own home several times before mentioning it, and then discussed the possibility that I was not getting enough l-dopa to my brain.The entacapone she prescribed gave me a much better quality of life. Her comment at the time allowed me to stop hunting for explanations. She said, " It doesn't matter what they are calling it, if treating you for PD is bringing an improvement in your life, then let's call it PD until they have named all the varieties that we all know are out there." Most of the time this is sufficient for me, I know the losses I have year on year, and that it is not my imagination that sinemet helps, after all it comes with some bothersome side-effects too! Occasionally something really stirs me up though, like the new neuro and his patent 'text-book' approach to PD, or even a discussion on this board.

Occasionally I wonder what I would have been like without sinemet and other PD medication. Then I remember what I was like prior to it, turning into my own grandmother as I looked in the mirror, she had some form of PD, but there was a stigma about naming it, so everyone thought she had gone -peculiar. It was not treated - there was no l-dopa then.

The desperate struggle to get out of a car; the inability to turn my head in conversation; the crushing slowness that never went away; the weird ability to stay awake for days with no sleep at all; the problems with dressing, and handling money; and the clumsiness OMG; the many people who thought I was grumpy and rude because I had no smile and my voice was hard to use; AND the tightness in my chest wall that didn't allow me to breathe, that I had feared was heart disease, and which had been thoroughly investigated...... and was completely absent....... all these improved by a little yellow pill containing something I knew nothing about at all.

Today I take less than when I was first diagnosed; I have always kept it low, and if in doubt have tried reducing intake slightly rather than upping it. This year I have for the first time noticeably 'odd' movements, and get fidgety. I'm not naming this, not yet.

Apart from the tremor thing, my experience sounds quite like yours. There have been, over the years, others who I have found a measure of similarity to, some of whom have posted here. I was 45 when I first started to have gait issues, probably puts me in the YO bracket. I think that I have a familial type of PIGD-Pd. But that is only because I have been looking for a 'label' that fits. Maybe it is something different. Sometimes I wonder if the parkinsonism label is covering something more ominous. Nobody has been really frank with me, enough for me to feel free to open up the discussion, except my Pd nurse, and no-one knows that I have been that desperate for answers that I have absorbed what seems like a huge and indigestible chunk of PD lore! Being too well informed is seen as suspect too, as a friend with MS recently discovered, when an inexperienced doctor decided her illness of 40 years was 'all in her head'. It took some sorting out, and an intervention by the 'good' neuro we share.

I've been seen by 8 different neuros in the same hospital. Two of them saw PD, both when I was unmedicated. My GP sees PD. I have come to the conclusion that, where the brain and neurological disorders are concerned, medicine is still in it's infancy.

I recently met a man who had been a psychiatric nurse all his life. He recalled how PD used to be treated before levodopa. It was considered to be a psychiatric condition. He remembered the introduction of l-dopa, 'we all though it was going to be the miracle drug, the cure, but sadly it was not to be'. I think we are still in that place.

I am cautious about it, the medication. I am lucky, I still get a few hours per dose. I know it is getting less effective though, and wonder what the next phase is going to bring. I am lucky that I came to it later rather than sooner; if I had been treated from the beginning, in 1994, it is likely that I would have been encouraged to take l-dopa with a lot less caution, and there may not have been the internet and good people available to help me learn what not to do. No online discussions with people who had trodden this path and had collective wisdom that the doctors haven't yet really tapped. I think I am fortunate to have met the many people with PD who I know. Most of them are in some kind of mental stew about exactly where they stand with PD too, one way or another.... It keeps throwing up these dilemmas......... and it doesn't let go, no matter what you call it........

Hope you find some answers, I know your post will help others in this place.
It is a valid discussion. Like you, "I didn't want this. I didn't create this."

I wish this was a discussion we could take en masse to the doctors, all of us with these wavering diagnoses...... and let them see us together, see our similarities and differences.... and then start to classify us. See us as we are in real life, coping with everything the full diagnosis brings, but with no surety that we are believed or seen......

Take care, and best wishes with your search......

Lindy