After 8 years my diagnosis may be changed from Parkinson’s to FND. Does anyone here have experience of getting off Parkinson’s medication?

[Joynb]

Change in diagnosis, Parkinson’s, medication

[Van604]

Hi. Yes, I was on Parkinson's meds (levodopa) for 2 years because they thought I had either Parkinson's or dopa-responsive dystonia (diagnosed by a movement disorders specialist). This was in 2018 and from what I remember, I was tapered off and there were no ill-effects, except the anxiety from worrying my head tremour would come back. It didn't, though, so that was a relief. I still have the bradykinesia, speaking and swallowing problems, and left side weakness and dystonia though - so all the symptoms I had originally minus the head tremour. They did it while I was in hospital, so they could monitor me. My original neurologist told me that, if it did turn out that I had Parkinson's, I wouldn't necessarily need to go back on the medication anyway, which confused me even further because I thought they were pretty sure that what I had was FND. Mind you, one of the many neurologists I saw (the one who first diagnosed FND) said you can have both Parkinson's and FND! So I guess they're not really sure either way and are just waiting to see what happens in the long term.

[Joynb in reply to Van604]

Thank you for your answer. It is very helpful.