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Waiting game: What were your early symptoms before diagnosis?

Hi to everyone,

I'm in my late 50s and I have a Datscan appointment in a few weeks. I have or thought I had weakness in my left foot and my left hand, and a terrible stiff painful neck, but this is in the right side of my neck. I've previously had mri on my cervical and lumbar spine but this doesn't show any trapped nerve that could be causing what I thought was stiffness, pain, and weakness in my left foot, tripping up often or catching it on my other foot. My small finger and the one next to it on my left hand wants to either get in the way or doesn't keep up with my other fingers.

Anyhow the neurologist thinks it is slowness not weakness, but says the neck problem is not a first symptom of Parkinson's, it is usually the shoulder that can be painful, he feels it maybe early symptoms of Parkinson's disease, as he says I also don't swing my left arm.

I feel these symptoms are all only obvious to me and so subtle to be anything like Parkinson's disease, and some days I have good days, and sometimes worse days with these symptoms. I just wanted to learn what other peoples early symptoms were before been diagnosed. Thanks and sorry for the long speel. - Flossy

  1. I started dragging my right foot, not walking correctly several years before being diagnosed. Then came stomach problems, constipation, back and neck pain. Then freezing episodes when I stood up and tried to walk. Right before I was diagnosed I was in a wheelchair because I couldn't stand up without falling backward until something caught me.

    1. Hi there,than you for your story. I have now had the Datscan, and I'm currently waiting for the results, but I now really don't think I have Parkinsons as the radiologist asked me after the scan what my symptoms were,when I told him he said maybe you need to have an MRI? Which suggested to me at the time that the scan was normal.

  2. My first symptom was my small and lousy handwriting. I thought perhaps because I wasn’t writing much at all because I was using devices to communicate. That was the reason. Then my feet were freezing in fact I told my primary physician that it seemed like there was a problem with signals from my brain not reaching my feet. I also was dragging one of my feet. When I saw my primary shortly after that, she referred me to a neurologist. When I saw her and she did a few tests in the office, she thought I had Parkinson’s disease and scheduled me for a datscan.

    1. I kept missing the kerb as my spatial awareness was wrong. I had a painful back in between my shoulders and had no sense of smell. I can taste sour, sweet, vinegar, salt that can be detected by taste buds but could smell nothing. My right foot kept getting what I thought was terrible cramp. I had a slight leg tremor.

      1. My first noticeable and disconcerting symptoms were on the left side of my body. My foot was dragging first, then my hand would not do what I wanted it to do (wash my face in unison with my right hand). Later after my diagnosis, I realized that my severe depression was a symptom.

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