I’ve just today been diagnosed with Parkinson’s. I’ve been experiencing symptoms for a few years now and 1st seen a neurologist last January and today was my 2nd visit. This guy was brilliant, he didn’t faff around and also consulted with his superior who both diagnosed me.
I did ask for any further tests and they both said that I was showing enough signs and symptoms that was conclusive for them. They have started me immediately on Co-careldopa 12.5/50mg three times daily, rising to 25/100mg three times daily. I’m being referred to a Parkinson’s nurse and will ho back in 8 weeks time
Welcome to our community forum. We just wanted to say hello and make sure you’re aware of the resources we offer here. To wit, for any questions you may have beyond crowd-sourcing, we recommend reaching out to our free and confidential helpline, on 0808 800 0303. Our staff of advisors can assist with a range of needs, from medication questions to finding support in your area, and are always happy to help. Added to this, our website, Parkinsons.org.uk, is an excellent source for answers and is always kept up to date with research and fundraising opportunities.
We hope these tools can help, and we wish you our warmest welcome.
Good evening Hannah … I am 70 & have Atypical Parkinson’s diagnosed following a positive datscan in June 2023.
As regards the tests you asked about one is a datscan of your brain, which I had.
BUT if it was a positive or negative datscan you would still get put on the same medication. So no point in having the test other than feeling more comfortable with the diagnosis.
I am now on Sinemet aka co-careldopa like you which I have been on for about 6 months. I started at 1 pill a day for a week & worked up to the 6 pills a day I am now on. I genuinely find it helps.
I have had vivid dreams & sleep issues with the Sinemet & take additional pills for that. Overall I am better off taking the medication. If you don’t get on with your medication you can stop it after telling your Parkinson’s nurse / GP.
One of the ways we know we have Parkinson’s is if the medication works.
Always try & book up a follow up appointment as they get very busy.
Hi Hannah, fairly new here myself. Currently on nothing, as nothing seems to work so far:roll_eyes: Im 56, so classed as young onset, as youre self. Yes theres lots to take in, havnt stopped researching since was diagnosed back in july, privately, then by nhs in December, id say welcome but technically wish you weren’t here, if ya know what i mean
Similar to you, had symptoms for a couple of years and by the time I got diagnosed in Feb 2024, I already knew really. It is all a bit daunting at first, totally with you there. I did a beginners guide online Zoom session, well 3 sessions which helped a bit. Mostly, it helped to confirm that you’re not alone, although it feels very much like that sometimes.
I’ve been taking Co-Careldopa 25/100mg 3 times a day but have just upped the dose to 37.5/150mg recently with a slow release dose for nights which I am going to gradually introduce. I found that upping doses too quickly caused a few uncomfortable side effects so slowly does it for me.
I’ve just turned 56 and play at a folk club. The medication has helped with my right arm and hand stiffness and I still am able to play so that’s my positive to cling to! I also have a “rescue” tablet which will give me a boost during a gig should I need it, haven’t been brave enough to try them yet… eek!
I also have a PD Nurse which I chatted to to before upping any doses. She was really helpful and we agreed the way forward together.
I have now come online to try and meet similar people of a similar age and progression to have PD buddies to bounce off, listen to, laugh with (sense of humour I suspect is a must to cling on to) and of course have a little moan together from time to time… or scream eh.
