I had my referral on 19/11, MRI on 8/12 and received letter from consultant just before Christmas. No results from the MRI yet but the letter states the consultant picked up on mild but clear resting tremor, bradykinesia and difficulty with cog wheel rotation. I’ve read and re-read the letter and it feels like a diagnosis may be a formality at this point. Has anybody else had similar before an actual formal diagnosis?
Hello Vicki. I didn’t want to read and not reply. The waiting for diagnosis is such a difficult time. That and actually waiting for a referral is just as frustrating. My husband had been waiting months for his refferal when he decided to go private using his works medical insurance. He was diagnosised within 15 minutes of that appointment. That was from observation from the consultantion. My husband then had an Mri scan 3 weeks later to rule out anything else.
Sorry I don’t really have answers to your situation but hopefully you will get your answers soon.
All the best to you.
Hi Lizzy, thank you for the quick response. I’ll keep pouncing on my phone and the postman in the hope I get some sort of answer soon!
All the very best to your husband but especially to you. I think the only thing worse than being the “patient” is being their significant other. Don’t know what I’d do without my husband x
Hi Vicki, I feel it is so important that I make sure my husband knows that he is still the same person after his diagnosis. Nothing has changed in how I feel about him. I know it can be difficult for the ther person too but we just have to stick together.
Let us know when you get answers.
All the best to you
Hi Vicki, I’m interested how you are getting on? Like you, I recently saw a neurologist who examined me and said I do not have full house signs of Parkinson’s because of lack of resting tremor, normal arm swing and handwriting, slight bradykinesia in hand movements, he offered me a Dat-spect scan or review in six months time, I took the option of a review, I am now aware of the tremor in my arm and leg when at rest, which has made me extremely anxious.
It has left me considering going back for a scan but not sure what to do, I don’t know if it would help to be diagnosed and given medication at this early stage, would it slow down symptoms or should I just wait and see how it progresses? Any advice would be gratefully appreciated as I am driving myself insane with worry.
I did have a similar experience. Initial appointment in August when told it was likely that I had Parkinson’s but needed a scan to rule out a brain lesion or other discernible issue. Waited 13 weeks for the scan. Very quick follow up appointment when Parkinson’s was diagnosed and medication prescribed.
I think that consultants don’t always realise that some patients need to have it spelled out because it is clear in their own head. I know from the follow up appointment that the consultant expected me to consider myself as having Parkinson’s after the first appointment but I didn’t. I think that was because Parkinson’s was not something I had considered and I was in denial. Getting my head round it now - I think!!
Perhaps you could email your consultant and ask, for your mental health, if this means that you have a PD diagnosis. Might help them sort out an appointment time if nothing else.
Hope you have support to help you process whatever the outcome is.
All the best, Sue