Hi Soccertese,

As per your own words to "provide links to information supporting my
position" how about a picture of you on the spin bike.

Bo

bogusia,
LOL, i take back that statement since i'm unwilling to prove it with a picture.

In my case I want to know. I was non-diagnosed for years, despite seeing neurologists 2 - 3 times a year and noting PD symptoms at the time of my visits. My first symptoms were in 2007, I was not properly diagnosed until 2010. Because, at least in part, of these failures of the medical establishment, I used my brains and did my own secondary research (i.e. read others' research) and learned things I could do immediately to help myself. One was high cadence biking--it has, in my non-medical opinion, greatly helped my symptoms including my mood.

Now this doesn't mean I ignore medical expertise. I changed doctors and take the new doc's prescriptions and advice. I wouldn't have changed had I chosen not to know. But I also go beyond my doc's advice, studying the subject myself and getting extra opinions.

I would be far worse off today if I had chosen not to know.

I've never thought about Parkinson's until this year when I started to feel that something was wrong. My right hand developed a tremor followed by Restless Leg Syndrome, which drove me absolutely crazy. I also started to get periods of severe neck and back pain for no apparent reason. Then, only a few months ago, I woke up with my lips being numb and both hands twitching constantly, especially when holding anything. I've had two MRIs and a video EEG, which produced no results. My doctor prescribed me Mirapex for the RLS. Recently, I've noticed that my speech has become slightly slurred at times while also being unable to finish a sentence without pausing. My doctors aren't sure what's going on. I realize that it takes time to diagnose Parkinson's as well. I just wish I knew what was going on so that I didn't have to be constantly afraid. I have bouts of severe dizziness at times along with stiffness in my hands. I'm a guitar player and electronics hobbyist. It's depressing to have difficulty playing the guitar or soldering intricate and tiny components, hence why I'm looking for answers.

My symptoms are somewhat similar to yours. On top of what you mentioned, I have nocturnal panic attacks. They are the worst kind as you are caught off guard. I am also depressed and nothing excites me any more.
My worst fear though is to develop dementia. I am a professor and I m extremely proud of all the knowledge I have accumulated over the years. To lose that to PD would be fatal to me.

I'm still battling the results of the wrong diagnosis and life long problems but I'm glad so many people were able to be helped because of what I went through. I'm also glad there are so many PET scanners throughout the nation now than there were when I was first misdiagnosed.

about PET scans as my Neuro told me when I had mine it can show obvious symptoms however you are studying degrees of light as the output of the scan and this can be tough to draw firm conclusions from.

Either way it can lead to definite diagnosis and in the uk insurance companies will pay out on a positive diagnosis.

Neil.