Hi, I’m Lizzie, 34 and had a few issues for a while. I was told last week that I had YOPD. I was told to notify the dvla, relevant insurers (travel, car &a life), and my husband / family / boss. They said I was not eligible for a datscan as I have an allergy to something in the dye, so they’ve had to make the diagnosis clinically. I’m being prescribed a form of levadopa for the next 3 months, increasing gradually, then go back to be reassessed and if worked they’ll move me to a different drug. I was gutted with the diagnosis but started to get my head around things and hope that treatment will actually help the problem and we can move on.
Anyway, I got my post appointment letter through stating ‘possible parkinson’s disease’. So now I’m confused? Have I got YOPD? If not definite when should I tell the dvla? Will they diagnose for definite if I respond to levadopa? Or will they just say possible for years?
Sorry for the questions, I’m just feeling confused and feel I want answers to what’s going on.
Thanks for any help you can give / light you can shed on this.
Welcome to the Parkinson’s UK forum.
I can understand why you’re feeling a bit confused, given what you’ve shared, I think you should clarify this with your GP or neurologist. I think you should hold off from contacting the DVLA for a short moment until you go back to a medical professional for a definitive diagnosis. We have a ‘Young Onset Parkinson’s’ page on our website that has a lot of helpful advice and information that I’m sure would be useful to you. You can find this page here - https://www.parkinsons.org.uk/information-and-support/young-onset-parkinsons.
I’m also sure you’ll hear from other members with their experience and advice soon, however, we also have a team of friendly advisers who can help you further this via our free and confidential helpline. Please feel free to give us a call on 0808 800 0303 or email us at [email protected].
Forum Community Manager
The letters from a doctor is such an art form now, its to ensure that legally they are safe which is very sad I think especially when we all need to know.
I’m a little bit older than you at 45 and have been trying to find out the answer myself. I’ve have a few symptoms, but my Neurologist isn’t 100% sure as I haven’t got all those atypical Parkinson’s symptoms. When I gained my first diagnosis, I was half expecting it, yet the letter said nothing about me having Parkinson’s but it did say possible parkinsonism which I took as the doctor having to cover himself and the practice against unscrupulous people and nothing against him.
After the diagnoses my wife and I was sent away with me being told to start some medication (which I never took). After reading the side effect she subsequently contacted the help line on here who were fantastic (they were the ones who said to hold off before other things were in place as mentioned in comments). They sorted a Parkinson’s nurse out for us, sent all the information we could ever want too. Once with the Parkinson’s nurse, she mentioned a place in Bury where they were excellent and referred me there, I was again told to hold off on the medication until my visit. From there the other side of my fun started with the New doctor saying that although I had some of the characteristics Parkinson’s, he didn’t think it was. I was booked onto a DaTSCAN which came back normal. Now in limbo I was a little confused, so I booked another visit with the neurologist whom said he thought it was Parkinson’s. He said that in the early days of Parkinson’s, you can have a false negative scan and he still thought it was Parkinson’s (time would tell) and also commented that the other doctor knew how to write a good letter.
He told me I needed to see one of his colleagues who, if there was any doubt was his go to person. I’ve been with him for quite while and he is still sceptical as to whether it is in fact Parkinson’s, but due to areas which have worsened between this visit and my last I’m now on the standard adult dosage Co-Careldopa.
Now the reason I write this is I’d stopped driving some time ago due to what was wrong with me and when I was first diagnosed with Parkinson’s I told the DVLA who sent a letter to my doctor who subsequently called me in to see what I was capable of. I didn’t know what was on the form and was just asked some basic question. I knew that two or three of them which was asked would take my licence away (but like I said, I hadn’t driven because I knew in my heart I wasn’t say). But if you are fine and the medication is not effecting you. You shouldn’t worry to much. My problems for driving was reaction time, visual issues and concentration.
On the medication, I certainly feel different, things seem easier. Is everything right, I don’t think so, but I do feel a little bit more like my old self which I haven’t done in a very long time. I have to now wait until I see the Neurologist to see what he says in a few months. Does this mean I have Parkinson’s, I honestly don’t know. It feels like a placebo effect at the moment and I think that’s maybe the other reason why they have said to you could have YOPD as it’s also very difficult to diagnoses if things aren’t as in the textbook cases. They want to be 100% sure first and I don’t think anyone can argue with that before they give us such a diagnoses in writing
You are correct the ‘possible parkinsons disease’ means they are very suspicious but can’t confirm until you report back a positive impact from the drugs on your symptoms. Then it will be confirmed. You can probably wait until your next appointment before notifying dvla if pd is confirmed. Hope that makes sense.