Hi, I’m new to the forum, I joined a few weeks ago in an effort to understand what was happening to me and my body prior to the big meeting with the Neurologist.
The meeting happened and have been diagnosed with “Right sided Hemiparkinsonism“ and have been asked to attend for a FP CIT SPECT in the next few weeks.
As the diagnosis came by post whilst I was on holiday and at midnight I’m reading the letter I’m both relieved to be diagnosed and concerned that there is little to be gleaned from the internet about the diagnosis.
Any information would be warmly received as to my version of PD, the SPECT scan and any others suffering the same version of PD.
Hello Jello & welcome
Hemiparkinsonism isn’t necessarily a diagnosis as such, often more a description of your symptoms. An FP CIT SPECT is also known as a DaTscan, its purpose being to find out if your dopamine levels are depleted. If so, that in conjunction with the symptoms you describe may lead to a diagnosis of Parkinson’s disease (PD) which often affects only one side of the body initially. There is plenty of good information about PD and parkinsonism on the Parkinson’s UK site. There are other causes of parkinsonism too and the purpose of the scans etc is also to help rule some things out.
Good luck with the scan and I hope you get a definitive diagnosis soon though be warned it is not unusual for diagnosis to take some time.
Hi, thank you for your response, no scan date yet but will update when my results are in.
Well I’ve had the SPECT scan a week ago and The Neurologist very kindly called this morning.
Diagnosis confirmed as Parkinson’s, surprised that I felt relieved to finally know after three years of misdiagnosis. Also very surprised at the speed post scan well done QEUH Glasgow - 5 stars from me.
Next step is a meeting with the PD nurse and my GP for meds.
The neurologist has warned me this initial meds balancing act can cause nausea and disorientation whilst they get the balance right.
I will share more once I know a little more.
Pleased you now have a definite diagnosis Jello. Even if it’s not something you actually want, far better to know what’s the cause of your problems than not. Sounds as though you have a good team on board too.