Misdiagnosed Anybody

Hi, my name is Catherine and I was diagnosed with PD 16 years ago, my symptoms have not changed in that time and I am still on a really low dose of Pramipexole, Sinemet and Rasagiline. Yesterday I saw a different registrar at the hospital and she spent 95 minutes talking and examining me. Eventually she called in my neurologist and they are both now of the opinion that I have been misdiagnosed. I have to have a Da Tscan and if this proves anything I may well be weaned off my medication. Has anybody else heard of this or know of anyone that it has happened to? I’m trying to not get my hopes up, but at the same time feel worried about coming off meds and what effect it may have.

Hi Catherine

Very interesting, what are your symptoms?

Hi Trixyz23
Tremor in the right hand mainly. Have had frozen shoulders and depression in the past, and also get dizzy which makes walking in a straight line impossible, but this is mainly due to really low blood pressure.

Gosh, I could have written that. Apart from the depression.

I worry that I have something other than (worse than) PD.

e.g. I haven’t lost my sense of smell. If anything it’s improved.

Interesting. @Catherine1 let us know the outcome of your dat scan and what you are being diagnosed with now.

@Lemon have you had a MRI & dat scan? I (diagnosed 2019) have had both, the neurologist said they are needed because some things can “behave like” PD but actually are not - and the 2 tests will confirm a PD diagnosis.

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Hi each
Tremor in left hand thats it nothing else

Hi All
Just had the results of my DAT scan and have been told that I do NOT have PD. Everything looked totally normal, if only the neurologist who I paid to see privately had given me a DAT scan all those years ago…
I have never felt so many emotions running through my body all at the same time, I’m laughing, crying and cross all at the same time. I start to wean off my drugs tomorrow. Fingers crossed it goes smoothly.


Wow @Catherine1 - not sure what to say…congratulations on not having PD??? 16 years is a very long time to be misdiagnosed. Did they have any suggestions as to what might be causing your symptoms? My fingers are crossed for you. :crossed_fingers:

Thank you, 16 years is a long time, it’s going to take sometime to get my head around it. They think it may just be an essential tremor, that can possibly be treated with an injection. Many thanks for your message and very best wishes for the future.

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