• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Decades of delayed diagnoses in young onset parkinsonism patients.

RogerBlack

Senior Member
Messages
902
https://www.researchgate.net/public...young-onset_monogenetic_parkinsonism_patients

We report 4 patients with young-onset monogenetic parkinsonism, each of whom was misdiagnosed with either a psychogenic movement disorder or chronic fatigue syndrome for 10 to 23 years after the onset of their first symptoms. Once the diagnosis was eventually made, they all had a rapid and excellent response to levodopa, albeit with the early appearance of interdose dyskinesias in 3. We discuss possible reasons for the missed diagnosis despite the relentless progression of their motor handicap. DAT scanning supported the revised clinical diagnosis of parkinsonism. © 2011 Movement Disorder Society.
 

Jeckylberry

Senior Member
Messages
127
Location
Queensland, Australia
I've had one specialist think I had dyskinesia or early onset Parkinson's. And been previously diagnosed with FND. You've got to get to someone who'll try out something on you. Interestingly Tegretol seems to work fairly well for me. Not tried dopamine.