Hi i feel awkward posting this as i am am still waiting for a firm diagnosis have been given a diagnoses recently of Prodromal Parkinsons. My Dat scan has been classes as equivocal and my symptoms (tremor, extreme fatigue, Dyskinesia, unsteady on my feet) are slowly becoming more prevalent over the past three years since there start. My consultant has prescribed me Sinemet and they are helping.
Despite all this he still seems reluctant to diagnose PD and has taken a watch and wait approach setting my next appointment in 12 months time.
I feel lost and whilst absorbing every piece of advice and help available to try and understand something i may or may not have.
Has anyone else had a similar experience o the road to diagnoses?
Any advice is greatly appreciated. I feel this wait is impacting on my mental health.
Hello Wayne,
Thank you for sharing your experience, you’re always welcome to post on our community and we’re here to support you.
We understand how difficult it must be feeling like you’re playing a waiting game and this taking a toll on your mental health. We’re glad that you’re getting support from a specialist who is exploring your symptoms with you. However, we know it’s hard waiting to be told if you’ve got a diagnosis.
The time it takes to get a diagnosis is different for everyone. Some people may receive a diagnosis of Parkinson’s quite quickly, but for others it may be a long process.
Waiting for a diagnosis can be stressful. You may feel anxious or frustrated that someone can’t tell you what’s wrong. You may feel angry that this is happening at all or worried about what a diagnosis might mean for the future. These feelings are all normal and there is no right or wrong way to deal with them.
Our webpage on how Parkinson’s is diagnosed might be helpful: How is Parkinson's diagnosed? | Parkinson's UK
You may also want to look for more information about Parkinson’s while you wait for a diagnosis, to help you feel more informed. You can read more about living with Parkinson’s on our Information and Support pages: Information and support | Parkinson's UK.
We hope this helps and we’re here for you 
Parkinson’s UK Moderation Team
Hi @WayneD
Mine took several months before I got a formal diagnosis and if I’m honest I was just terrified that it might have been Motor Neurones Disease so once they ruled that out I could cope with anything else.
But it sounds like you have a diagnosis of PD… prodromal really just means very early stage, and you’ve been prescribed Parkinson’s medication, which is working for you.
I would be tempted to just go with that for now and if it changes in future you can adapt, but cross that bridge if you come to it.
Today you know what your symptoms are, and you’re doing your research about them which is great, well done. Aside from medication, are there things you can do to help alleviate those or minimise their impact?
For me that question felt a bit overwhelming so I had to just focus on one symptom at a time.
If you were going to choose one of your symptoms to focus on first which would it be?
Simon