Dr dx Parkinsons or Parkinsons Plus - another look at info

[TigerGirl79]

DH was diagnosed in December with either Parkinsons or Parkinsons Plus. He is struggling to get his head round Parkinsons, never mind looking at Parkinsons Plus. My question - do you think that the Dr would mention Parkinsons Plus without any other reasons behind their thoughts?? I questioned the consultant about it but he said it was literally a case of seeing how quickly the disease progresses before they can make a definitive call on the diagnosis. However, I did a deep dive into DH's diagnosis last week (off with Covid) and I read that upgoing plantar and brisk reflexes are a significant sign of MSA and not Parkinsons. It is all very confusing. Sorry if this is all a bit jumbled up, I wanted to post to see if anyone had any thoughts about it.

[Ruffner]

Hi Rachel, Many times a neurologist will wait several years before making a Parkinson's diagnosis. In my own case, I was dx with Parkinsonism and was followed for five years before officially being dx with PD. A prominent resting tremor will usually result in a dx of PD but if there is not tremor or if the tremor is not resting often they will wait and follow. After several years, it usually becomes obvious if it is Parkinson's-Plus. Kind regards, Ruffner.

[Hidden]

Yes they like to hedge their bets until they see further symptoms progressing. They might leave it for a couple of years to be honest, until they decide. Dad was diagnosed with parkinsonism, then later MSA. (And never actually with Parkinson's.) It did cause a confusion with people like social workers that never heard of parkinsonism.

It was a way of saying something was wrong and there were some initial indications it wasn't Parkinson's but they wanted to wait and see.

It's important if you need support from the care authorities to be clear that it might not be Parkinson's, because otherwise they don't understand the fact that people with MSA might decline much quicker so need different support. Kx

[Derkie54]

Hello,

I can understand your frustration but this is not unusual by the looks of it.

My wife was diagnosed with possible MS many years ago, this was then changed to PD then in 2016 changed to MSA.

We don't worry about having a label anymore and just deal with what comes when it comes.

Take care

Derek