Hi Laura, Since i learned your news yesterday I have had a host of questions buzzing around my mind, this thread is starting to answer a few. One of the things you bring up is the hand tests we all seem to get when we visit with a neuro. This has been a real bugbear for me as it has always seemed to be very different with each neuro, and their conclusions (in the form of notes) very subjective. (Once a neuro grabbed me by the elbow, apparently testing for cogwheeling, and twirled my arms around, very impressively, then wrote in my notes that I was feigning rigidity. I didn't. I just had extremely painful skins cracks due psoriasis on the elbow which he was holding!) So would really be interested to hear about this.

My question is, how did the NIH approach differ? You suggested that they adjusted how you were holding your hands to something that gave a more accurate determination. As we are all dependent on these kinds of measures of our PD symptoms, not only with hands and arms, but also walking, it would be interesting to know more, though I understand that any rote testing of this nature bypasses the point, which is that neuros are observing our reactions to more than just the mechanical tests themselves, and assessing us on their observation, rather than our performance.

I do hope that this will bring you more clarity in finding and achieving a better level of health, that is why we first find ourselves at the doctors, wanting to know what is wrong.

I have an idea that it would be good for you to go back to your earliest posts, and revisit them, to see how your own ideas on PD evolved, and how you viewed your diagnosis then. I seem to remember that there never was clarity in diagnosis for you, and am I wrong in remembering that you had an initial diagnosis of essential tremor?

I am also interested that you remain with a diagnosis of parkinsonism. Is there any indication that the NIH doctors see this as anything other than DDS? Because you certainly had symptoms of something prior to your PD dx.

Given all that is known about what the mind can and can't do, I would still be hesitant in accepting a psychogenic explanation for what you have been dealing with, regardless of any stress that you may have been going through. (I was under pressure some years ago to accept this possibility, to doubt my own experience of rigidity and extreme slowness - and the observation of friends and family! It was suggested that I had depression. Off medication, in the middle of a big return to being stiff and slow and looking completely 'other' than usual, old and very lacking in competence, it was my response to an unexpected 'tug' test that convinced my consultant neurologist of my neurological symptoms. I nearly floored us both by falling backwards like a plank! A neurological symptom, and not a psychogenic one. Leaving things very open ended to the present. My brain is not ready yet for a 'closer examination'!)

Which reminds me that I read somewhere in a clinical tome that a diagnosis of PD is never definitive, and will always remain open to re-interpretation until it is possible to examine the brain so I do not know where that leaves patients, given that some treatments are extremely invasive.

I would agree absolutely with your statements on side effects of dopaminergic medications, as I believe that many of us confuse these with the symptoms of PD from the earliest days of being diagnosed, and we can feel in the initial stages of treatment that we are 'progressing', and this is encouraged by doctors who urge us to take higher doses to get a better response. Our families often see us as 'getting worse' and reinforce this idea, i.e. more means better.

Being contrary, I have always chosen to lower medication as a first step, if getting symptoms that make it seem as though I am getting worse. My doctors don't like me much for doing this.

Now on treatment for the neurological symptoms of Pernicious Anaemia, and having had some diminution of what I had assumed to be signs of PD symptoms worsening (overwhelming fatigue, lower back pain, apathy, brain fog, inability to sleep, immobility, breathlessness, struggle to stand/get out of any chair, limited ability to walk) I will admit to being no more sure that I have PD than you are right now. Some of these things have changed for the better, but others have not changed at all, and I now only know I have 'something' for which, at the present, it is convenient for my medical minders to choose to call Parkinson disease. (The same consultant neurologist who is very expert in PD has absolutely no clue about the neurological damage that chronic B12 insufficiency can cause.)

There is a blind spot that needs addressing in medicine. How do you rule something in, if you are taught first to rule it out by dismissing it as having relevance? Or if you are taught that if you cannot find evidence for someones self-described symptoms, then it is likely to be caused by some flaw in their thinking. i.e. have a psychological cause, rather than a physiological cause.

Across the western world this is now being used to exclude people from disability care, for a whole range of clinically observable conditions, and I am very wary of how it has gained ground in medicine. Is this good science, hubris, or is it an economic argument?

I do believe that it is through cases like yours, where the borders blur, that the most learning can be done. I also, reluctantly, (because I know what loss of wellness can to do us individually in our daily lives) am coming round to the idea that if PD is suspected, then snap diagnoses resulting in treatment with the kind of drugs used in PD, based upon brief observational tests and a dopamine challenge are not the way to go. Even when they follow other clinical investigation. Neurologists are not magicians. A possibly better approach would be a period of intense observation of ability to perform daily activities, and a further period of observation with no treatment at all, combined with a radical programme to exclude other causes, appropriate scans and perhaps in the future real-time scanning to see what is actually happening within the dopaminergic pathways. In the long term this would, I believe, limit diagnostic mistakes and ensure that those who do have PD will not spend years trying to find out what is wrong with them. And ensure that those who don't have PD do have a mechanism of finding out why their bodies are malfunctioning.

Good luck with it all, I do hope that this all signifies a return to health for you and that the path to understanding your body's needs will be easy and beneficial.