Spoiler: It's many different things and this is why each person's journey is a little different.
Prof. Huw Morris is a leading UK Neurologist specialising in PSP and CBD. He has a number of research teams covering different areas.
One of his research areas is leading up the PROSPECT UK wide study which aims to find better diagnosis regimens. The idea of this is that the more precisely PSP and CBD can be diagnosed then the more precisely causes and treatments research can be targetted.
This is an excerpt from an interview in the Spring copy of PSP Assoc. Journal.
"Research has also helped us to improve the diagnosis of PSP. Due to an increasing understanding of the condition, the diagnostic criteria have bee revised to be broader because we now know that people have varying types of PSP, different to the classical form. However diagnosis remains a challenging area and I know many people with PSP have initially been mis-diagnosed. One problem is that the disease features are not specific to PSP, with some people initially having symptoms that are similar to Parkinson's disease. One of the ways we are trying to improve diagnosis is by developing biomarker. We are currently comparing biomarkers of 2,000 patients with Parkinson's and PSP to see how they are different."
If you are in the UK why not subscribe and make a small donation to the Assoc. at the same time? It's a good read and they are doing amazing things with few funds. It was they that kicked off the funding for the PROSPECT research.
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Kevin_1
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"Huw Morris is Consultant Neurologist and Professor of Clinical Neuroscience at the Royal Free Hospital, National Hospital for Neurology and Neurosurgery and UCL Institute of Neurology. His main clinical and research interests are in Movement Disorders and Neurogenetics, particularly early onset, genetic and familial Parkinson's disease and atypical Parkinsonian disorders such as Progressive Supranuclear Palsy, Cortico-basal degneration and Fronto-temporal dementia with Parkinsonism. His clinical and research training took place at the National Hospital, Queen Square, the Mayo Clinic and the Western Pacific island of Guam. He was Senior Lecturer and then Professor of Neurology and Neurogenetics at Cardiff University from 2003 to 2013. His research is funded by Parkinson's UK, the Medical Research Council, the PSP Association and the Motor Neuron Disease Association. He is Chair of the Dendron Parkinson's Disease Clinical Studies Group and the Clinical Research and Academic Committee of the Association of British Neurologists. He serves on the Research Advisory Panels of Parkinson's UK, the Motor Neuron DIsease Association, Cure PSP and the Multiple System Atrophy trust. He also serves on the Honorary Medical Advisory Panel on Driving and Disorders of the Nervous System for Driver and Vehicle Licensing Authority."
There is another superb 'PSP' Neurologist in Cambridge: Professor James Rowe. There will be more too... my knowledge is limited.
Were really fortunate to get onto his patient list. He is such a nice guy too.
I have a PSP question. Our neurologist basically said (paraphrasing) that it doesn't matter whether a person has CBD or PSP, because the treatment is the same (or lack of treatment, as the case may be--only mitigating symptoms?). Do any of you find there's any difference in treatment from PSP to the things it's often confused with? (Not including idiopathic Parkinson's, in which case we're talking the whole levodopa thing.)
No difference in the "lack thereof" treatment of my husband in the year he was considered a PSP query dx by the tertiary neurologist, vs this past year where he has been considered CBD....
Thanks, Anne. One person was advising us to push for another opinion at a specialist place, but it's hard to know whether it's worth the fight, if the treatment is the same.
I think now there are some nine variants within the PSP family of disorders. From a clinical perspective there is no difference to treatment except perhaps PSP - P, PSP Parkinson's, where Levadopa and the other Dopamine agonists are sometimes used. PSP - P is not Parkinsons. However I would say it is so complicated now.
Add to that some folk might be predominantly of one ilk, but have some features of another. My wife appears to be in this situation. Quite often it is not really certain what type of PSP it is until the brain is examined after death.
So I'm in Anne G's court on this. I wouldn't stress over it.
Bellow, you will found a link to a paper of your recommended Huw Morris et al. group. It seems to be a clear difference within Richardson syndrome and PSP-P. I have still adherence to Tolosa's paper with 5 different types of PSP. Where do you found 7 subtypes. Please, could be so gently to post any reference?
Hey Kevin who gets the biomarker. The patient or his offspring. Or could the offspring AND the patient give this? (Or is it only found postmortem?) Would it not be informative (if not frightening) to those who have a genetic predisposition ? How are you, I've been away for awhile...
No - the bio marker might just be a naturally occurring molecule, gene, or characteristic by which is diagnostic of a particular illness. So if trying to make a diagnosis they would look for them. The idea is to get a definite diagnosis early on.
As far as I know PSP is still not regarded as being hereditary.
I'm getting by OK - I'm seeing Liz every afternoon and bringing her home for a couple of hours when we get the sunshine later this week - Sitting in the garden is the idea.
Hey Kevin, Oh Liz will so love a warm afternoon in the garden....I would love a warm afternoon in the garden.....
So I will have to google biomarkers but it must come from the patient....via DNA right?
I wonder if in fact they absolutely are sure there is not a genetic predisposition. Christ (sorry God) they don't even know what it is til the third diagnosis....and then there are 7 types.....sometimes the thing youre looking for is right in your hand eh? just saying.....
So good to hear from you and I so appreciate your information even if I'm across the pond!
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