Confused diagnosis


#1
Hi, My name is Ken and I hail from Coventry. I am 43 years old. I had been on track over the past 12 months to receive a formal diagnosis of Parkinsons Disease but last week my consultant hesitated about that and indicated that I have "Dopa-responsive Dystonia" instead.
I mainly have an affected left leg and arm, which stiffen up when the levadopa wears off, but none of the tell-tale tremors etc associated with Parkinsons.

However, I have 80% of the non-motor symptoms from the chart I filled in from this website.

I showed the consultant but it was dismissed as being too broad to pinpoint exactly to parkinsons. All my tests, bloods & scans have come back clear.
DRD is only half of my symptoms. They say there are no cognitive issues with DRD, but that is what I have too. Also a lot of other stuff going on.
So currently I am a little confused.

#2
Ken
That's not a nice situation to be in! I suggest that as well as posting here you ring the PUK help line and ask to speak to a nurse. They will call back in a day or two. I found them excellent in helping me decide what I should do next when I was concerned about my early diagnosis and treatment.

#3
Hi Ken and welcome to the forum.
As you are finding out it can be difficult to diagnose Parkinson's with certainty. I makes for an uncertain and stressful time. In my case I had a provisional diagnosis very early but it was two years before it was confirmed.
Hikoi's advice to call the helpline is good and the nurses there will be able to advise you.
Parkinson's affects different people in different ways and a lack of tremor doesn't prove its not Parkinson's. It is also worth remembering that stress and/or tiredness can blunt cognitive functions.
Finally Parkinson's is often quite slow progressing and with the right meds many of us live pretty normally. I hope that helps.
Please keep posting and let us know how you get on

Elegant Fowl

#4

Hi ken

i am in the same situation.   Been on meds since last October Neurologist States she felt it was early onset Parkinsons.    Dat scan came back essentially normal dopamine and is being re checked as there was some asymmetry in one area of brain 

went to movement specialist yesterday and explained on going issues some movement and some others is sleep, vibrations, heavy right arm, muscle spasms, twitching, lower back pain etc 

he examined me and said he could not see enough to diagnose me

Good news but I had spent time coming to terms with diagnosis.      He has stopped my sinemet and wishes to see me again in six weeks when no medication in system

anyone had similar experience ???