Im 46 year old male that was clinically diagnosed with YOPD last March. I have weakness down my left side with a tremor in my left hand, stiffness in my joints, lessened sense of smell, a gait and loss of arm swing while walking on my left side. Im currently taking ropinirole and madopar 3 times daily and i have seen some improvements with my symptoms. Ive seen 2 different consultant ( the 2nd because my usual consultant was on holiday), and both have said that i “tick all the boxes for YOPD “. However, my datscan came back as normal. This has really confused me and to be honest its feel really daunted as my consultant still believes i have YOPD but says he can’t rule out changing his mind in the future. Im really considering just giving up and asking to be dischargedI feel that in my case ignorance truly is bliss.
Hi @Lee80 thank you for reaching out. It’s completely understandable to feel overwhelmed when your symptoms and your scan results don’t seem to line up. A normal DaTscan can happen for some people, and it doesn’t automatically rule out Parkinson’s. Your consultants are looking at the whole picture. Uncertainty is incredibly hard, but you deserve clear guidance and support.
Please don’t deal with this on your own. Your specialist can talk through what the scan means, why they still suspects YOPD, and what the plan looks like going forward. If you’re feeling daunted or unsure about continuing with appointments, that’s something worth sharing with them too, you’re allowed to ask for reassurance.
We’re here for you as well. Our free, confidential helpline can offer support and help you navigate what comes next: 0808 800 0303. Sending you all our best wishes
Thank you so much, its hard because I dont feel like I can tell many people incase the diagnosis changes and the ive got to tell them different, also im second guessing whether I should join any groups to share because im wondering should I even be there incase they change their mind in the future, its literally the last thing i think of before going to sleep and the first thing i think of waking up and even to the extent if i wake in the middle of the night im checking my tremors just as a validation but then i cant go back to sleep, my poor wife and sister have been so supportive and yet im sure ive added stress onto them because im struggling, i have found this forum a great way to get information though.
Hi @Lee80, it sounds like you’ve got a good support network with your wife and sister, and no doubt they’ll support you whatever the outcome. We wouldn’t worry too much about joining groups, most people will have been in similar situations awaiting a diagnosis themselves, and will be happy to support you.
We’re glad you’ve found this forum useful, and please do continue to post and engage with it, and please do keep us updated with your progress and your next steps. We’re definitely here for you
Hello @Lee80 a Dat scan is not proof that you have or don’t have Parkinson’s , it just another tool for the consultant to use to help them make a judgement on your condition with other factors such as slow movement, gait, arm swing . There is no one test or scan for Parkinson’s
Now it could be FND ….
Parkinsonism is a clinical syndrome characterised by bradykinesia, rigidity, tremor and postural instability.
Idiopathic Parkinson’s disease (PD) is the most common cause of parkinsonism.
Other primary (atypical) Parkinsonian disorders can closely mimic PD, which makes a correct clinical diagnosis challenging. These include progressive supranuclear palsy (PSP), multiple system atrophy (MSA), dementia with Lewy bodies (DLB) and corticobasal syndrome (CBS).
Hi, thank you for the advice, my consultant has said that its definitely not parkinsonism as im “too young” I did for some research on FND but I dont have seizures or anything im not too sure in detail about FND, but the 2 consultants has said that looking at me and with examinations, I “tick all the boxes” for YOPD, I have another appointment on the 3rd September so I’ll mention everything to him then and see what the situation is with the plan going forward. I do appreciate your advice and will keep you updated
Hello , not a problem. Have you checked this out it’s toooooo long to download here
Lots of different websites have the UPDRS just go through the you think is best for you.
This was never used on my wife ! I asked the reason why .. I was told by the consultant “ I can see it is Parkinson’s”. She only walked 10 feet in front of him. , No out ward signs at all. Not even a shaky hand … YOPD
Just to update, i saw my consultant today and im now a SWEDD patient, I told him that I know that clinical diagnosis is now around 44% accurate and there’s a 56%chance that my YOPD diagnosis will change in the future, which he didnt confirm or deny, I mentioned whether or not I could have non seizure FND and he said “he was very impressed that I as a patient but he doesn’t think that fits my symptoms “, he said that i shouldn’t take notice of the normal datscan, and im still ticking 3/4 boxes for a clinical diagnosis of YOPD, but he can’t give me any certainty, he also saw 2 videos of me 4 weeks apart the 1dt before med increase and the 2nd after med increase and he said that he can definitely see a difference in my walking also which I find strange is as I was going to the room, the nurse said that he had a pharmacist in with him for my appointment, however she was watching my walking examination and writing lots of things down which I find unusual for a pharmacist to be there but I could be wrong maybe its common, and now my consultant has reduced my ropinirole just to see if my symptoms gets worse again, just to make sure that I was definitely responding well to meds. Im going to be honest, I cant keep up with this uncertainty to keep going to appointments and taking meds for them to change their mind further down the line, ill go to the next appointment in 4 weeks and if im still left confused and leaving with more questions in my head than I had going in, then im definitely discharging myself and to hell with it, ill live with whatever it is and learn to cope, anything will be better than this mental rollercoaster.
Before making any decision about stepping away from appointments or treatment, I’d really encourage you to discuss how you’re feeling with your healthcare team, and please don’t make any changes to your medication without their guidance.
And as we have mentioned before, you’d also be very welcome to chat to our helpline team on 0808 800 0303. They’d be happy to listen and help if they can. And please do keep using the forum – you’re very welcome here while you’re going through this uncertainty.
