I was diagnosed with Parkinsons when i was 50 in September 2023, however my symptoms (tremor in right hand) began nearly 18 months earlier.
In the time since then my symptoms have not got any different and many days i do not notice the tremor at all. I have never been put on any medication and indeed i do not take medication for any condition at all.
I have not had a Datscan as my consultant told me at my first appointment that it was probably not worth it given my obvious tremor and arm swing.
At my last appointment he seemed surprised that there had been no deterioration and on the letter I received after my appointment my diagnosis was now “probable parkinsons” - but in the text of the letter it did say he was almost certain this is what it was. However i am nearly year further on and nothing has changed.
Has anyone else experienced circumstances such as these where deterioration is almost non-existent over a three year period but it still develops into PD?
While i am not complaining at all my symptoms have not got worse and am grateful for that, as someone who has suffered from poor mental health for most of his adult life being told still has a huge impact on your outlook on life.
at this point you being to think maybe you have been misdiagnosed, but you still have the tremors from time to time and you think even if it is not PD it must be something and you end up worrying about what that could be!
I am 71 years old. I was told I had Parkinson’s by the head GP at my new surgery about 5 years ago. Two years ago [June 2023] I saw an NHS locum neurologist whose speciality was not Parkinson’s. He arranged a datscan for me which was positive for Parkinson’s. I also had an mri brain scan which was more or less normal. I was given an experienced Parkinson’s nurse who saw my datscan and said that I did indeed have Atypical Parkinson’s, which does not respond well to medication.
I have gait freezing and this is a real very bothersome symptom of whatever I have. I do shake when eating or carrying something like a cup of coffee. I play Indoor Bowls and about 4 weeks ago I had 6 falls during a game and had to stop. I had no balance and I could hardly walk.
So I was put on Sinemet about a year ago and I thought it improved my symptoms. But I started to get sleep related side effects. Insomnia, nightmares, REM sleep etc … This worsened my fatigue and I am unable to walk more than 200 yards.
So I saw a very good Specialist Neurologist privately, about 6 weeks ago, he looked at my datscan and said he thought it was normal and he has send it away for an expert second opinion.
He also examined me and said if I had Parkinson’s my symptoms were mild. My gait freezing and fatigue he puts down to something else not Parkinson’s.
He suggested I stop taking my Parkinson’s medication which I did gradually. I have been off it for a good few weeks and have noticed no change in my condition. That is I have not got any worse.
So my diagnosis is up in the air like you. I do have other health issues which complicates things a bit.
With Parkinson’s they use medication to treat the troublesome symptoms. There is no cure. Exercise and a healthy diet helps. If the medication helps then you probably have Parkinson’s, it is one of the tests. You get put on Parkinson’s medication whether your datscan is positive or negative, so not a lot of point in having one.
Then of course, like me, your datscan can be open to different opinions.
Hello aberdeenloon - we’re sorry to hear all of this. While we understand it’s frustrating and you’re in the process, we definitely recommend keeping in constant communication with your healthcare provider or Parkinson’s professional. In the meantime, hopefully our forum members can give you some more support in the meantime.
I was diagnosed with Parkinson’s disease in 2008 for obvious signs of that disease. My situation has hardly got any worse since diagnosis. My Consultant Neurologist has referred to it as a benign form of Parkinson’s Disease. My Father and his Sister had PD. She died with 7 years of diagnosis as a result of her PD. My Father had very bad symptoms for nearly 30 years but died of an aortic aneurysm. We are all different.