Should I be self advocating possibly?
before I start I would like to say the NHS is great just has a few wee flaws now and again.
here we go I will try keep this as short as possible.
Neurologists words in a letter containing “resting tremor on the left side, reduced arm swing, and significant cog-wheeling and bradykinesia on the left side”
So seen a MDS who set up a DaTSCAN due to potential (functional tremor) and age ect as in late 30s he started me on co-carledopa and I got given a newly diagnosed with Parkinson’s pack (blue folder thing) on NHS when I seen Parkinson’s nurse.
The Co-carledopa worked great with rigidity and bradykinesia but not perfect, however got told normal need to find right dose and timings. I was on 25/100mg x3 a day.
while waiting on datscan I accepted that Parkinsons seemed likely now after getting that folder and Parkinson’s nurse, along with the co-carledopa working I really was expecting confirmation at next MDS appointment.
however that was not the case DaTSCAN came back normal which was great it showed me my resting tremor was probably (functional). I was still expecting to be told it’s Parkinsons due to positive response to co-carledopa and obviously the clear Bradykinesia and Cogwheeling on left side ie (one side only (early stages/stage1/early:young onset Parkinson’s disease).
Oh I was very wrong I got told “levadopa is not needed when DaTSCAN is Normal, it should not be making any difference and should not really be making a big difference after only a few months use (I have read seen and been told peoples worked pretty quickly). I have to wean off the medication as I don’t have Parkinsons what I have is FND due to tremor being Functional and DaTscan normal” he pretty sure he has made a mistake re Parkinson’s diagnosis due to normal datscan and age.
My confusion is I was also previously told (seems this is the case through a lot of reading/reasearch) that normal datscan in early Parkinson’s ie only one side affected currently but having bradykinesia and one or both of rigidity/tremor and a positive response to co-carledopa is enough for a clinical diagnosis or at the very least further evaluation ie possibly another datscan maybe a year later if symptoms not going away or getting worse especially “OFF meds”
So is there anyone who thinks I should push back as since stopping sinemet my symptoms are back again constantly:(
I am not saying the MDS definitely wrong they have done a lot of studying for these things but something feels a bit off.
Also any people share something similar? If so what did u do?