Tough Diagnostic Challenges

[Guest guest]

FYI, I found the original extract that Pam put up earlier on the

difficulties of diagnosing things like MSA et al. I have forwarded it ito

several family members. It is in the Newletter at

http://www.pspeur.org/

" Technological improvements in scanning techniques,

explosive

advances in knowledge of the brain and painstaking

research by

neurologists have all helped them, particularly in

centres of

neurological excellence, to recognise, segregate,

diagnose and label

more and more different, but closely related

neurodegenerative

diseases – often with obscure and even frightening

names, little

understood by the public. Alzheimer’s, Parkinson’s

disease and Motor

Neurone are the three largest and best known

neurodegenerative

disease ‘labels’. Progressive Supranuclear Palsy,

Multiple System

Atrophy and Cortico Basal Degeneration are others.

However, even within these centres of excellence,

diagnosis is

sometimes spoken of as an art and not a science; and

there are many

patients diagnosed well away from these centres.

Regrettably,

misdiagnosis can and does occur, despite

internationally accepted

clinical criteria for diagnosing (and hence labelling)

most of these

diseases. With PSP, there are, agreed for research,

clinical criteria

for possible and for firm diagnosis. Unless the

criteria for firm

diagnosis are met, neurologists are unlikely to tell a

patient that they

definitely have PSP. This can lead to tremendous

frustration in

affected families seeking to know what is happening.

Equally, it is

stressful for neurologists to ensure, as far as

humanly possible, they

avoid mis-diagnosis. To complicate the issue, for

older patients,

normal ageing also involves progressive death of

neurons. Because

some of these diseases are very similar, mis-labelling

can easily

occur.

In summary, it can sometimes be immensely difficult to

diagnose

neurological diseases accurately. A wrong label can

have devastating

implications, though no label at all may be even

worse. It is

nonetheless still, unfortunately, only too easy for

the wrong label to

be attached to a patient, leading to treatment for the

wrong disease

which can have detrimental side effects. Then, as the

disease

progresses and becomes clearer, a new label has to be

given. This

can be very difficult for the patient and family to

face. However, the

harsh truth is that it is still only on pathological

examination of brain

tissue that the actual neurological condition from

which a patient dies

can be confirmed with near certainty. It is in these

pathological

examinations that the true number of mis-diagnoses is

revealed.

Once a label is attached to a condition, following

firm diagnosis,

treatment and support are ‘applied’ accordingly, under

the direction of

the diagnosing neurologist. Afflicted families then

often contact the

particular Society or Association which is involved

with ‘their’ disease.

A re-diagnosis and new label can be traumatising to

the family

concerned, with, amongst other effects, a

re-allocation of their

‘back-up’ and support system, as they are switched

from one charity

to another. It could be argued that a different and

simpler label could

be useful for some aspects of their care, as many of

the symptoms

(as opposed to the underlying cause) are shared

between these

diseases and nursing requirements can be grouped, eg

in movement

disorders.

For the general public, an even simpler label covering all

neurodegenerative diseases would be enormously helpful in

engendering generic awareness. In the same way that cancer

patients do not need to identify the particular type

of cancer that they

are suffering from, for the public to ‘understand’

their situation, there

is perhaps a need for a generic name for all

neurodegenerative

diseases – ‘neurosy’ has been suggested, but any short

medically

acceptable name with which the public could relate

would be

enormously helpful in engendering greater awareness and

understanding by the general public of these often

devastating

diseases of the brain. "

Sennewald Charlottesville, Virginia