Im 39 years old male 2 years ago i had a stroke due to dissections in my carotid arterys. This has now developed into a pseudoaneurysm.
Ever since this happend my health had massivlely deteriorated and is getting worse. Seen the stroke team multiple times and they dont think my dissections/aneurysm/stroke are to blame.
My symptoms started with fatigue and inabilty to open my right eye, was told facial masking on the right side. Then came dizziness and clumsinees. Next came issue with my gait my right hand drags behind like its stuck to the floor (this is getting worse)Next stiffness in my right arm and fingers
Stroke team diagnosed Functional Neurological disorder
They said i still needee to see a neurologist.
After a years wait end of February i seen a neurologist. Within minutes he diagnosed me with cervical dystonia and dystonia of the right leg. He did a Neurological exam diffent to ones id had before. He then orderd a dat scan as he thought it could possible be right sided parkinsonism. I had my scan 2 weeks ago. I had my annual check up last week my gp has results but will not give them to me. Said i need to wait for my neurologist. This is all incredible frustrating. How long do you need to wait for results? Or any advice.
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Good evening Paul … I’m 71 & was diagnosed with Atypical Parkinson’s in June 2023 following a positive datscan.
I can only talk about the Parkinson’s side of things.
As I said I had a datscan that was positive for Parkinsonism. However the positive datscan is not 100% proof of Parkinson’s . You can have a negative datscan but still have Parkinson’s.
So no matter what my datscan results were I would have been treated with the same Parkinson’s medication.
I am on Sinemet aka Co-careldopa & this has helped my symptoms. If the Parkinson’s medication works then this makes the Parkinson’s diagnosis more certain.
In my experience my GP will not help or advise on Parkinson’s matters & my experienced Parkinson’s nurse will not help or advise on non Parkinson’s matters.
Your GP probably realises that you need specialist neurological advice that he is not qualified to give.
Perhaps contact your neurologist’s secretary & voice your wish to get your datscan as soon as possible.
Hello Paul … BEFORE I had my Mri Brain Scan [normal], spine Mri scan [wear & tear issues] & datscan [positive for Parkinsonism] my neurologist had arranged an appointment for me to see him to discuss the results of the 3 scans, which he did.
It was around 2-4 weeks after the scans from memory. I was not bothered about the datscan results at the time because I thought my issues were to do with damage to my spine. In hindsight I was partly wrong.
As I said my datscan results were irrelevant as I would get prescribed Parkinson’s dopamine replacement medication either way.
I would imagine your neurologist will prescribe you Parkinson’s medication on a trial & error basis as happens to us all.
Of course I am not familiar with the complicated issues you describe.