For the most part the medical types seem happy to categorize us, our symptoms, our MS types into neat little boxes.
Personally, I feel this to not only be erroneous, but also reductionistic, because
to do so does not further the understanding of this disease, nor our
symptoms, nor our suffering. It also, interferes with the ‘mapping’ of
the progression of both the disease in general and symptoms in
particular. Except in very severe cases of Progressive MS, the general
progression of the disease is gradual and at times isolated to
For example, when lesions are active, it depends on the severity of
inflammation, size of lesion and most importantly the location of the
lesion, what damage or loss occurs. It is fairly rare to have overall
systemic lesion activity.
Unfortunately however, even small lesions in the spinal cord can cause large amounts
of disability. The higher up the cord – that is the closer to the
cervical area- the greater the impact on the body’s ability to function.
It would be far more logical to conceptualize the disease as being on a
continuum rather than discrete ‘boxes’. We only have to compare notes
with each other to realize that although several people have SPMS or
PPMS or RPMS, the presentation of symptom clusters, severity and
disability varies greatly.
Even within any one person, the course and progression of the disease may
vary. For example, some people may have ‘seasons’ of great activity and
times of relative stability.
Additionally, some of us may have days or weeks where our legs seem worse, or arms or
speech, which indicates that while some lesions may be active – others
may be ‘dormant’.
Furthermore, it is possible for lesions to cease activity altogether and result in
atrophy (shrinkage) of the ‘scar’ (sclerosis). This may occur during,
or independent of any treatment.
Then of course there are the ‘silent’ areas of demyelination and
inflammation. By silent, I mean that an area of the brain, for example,
may be active and register as a ‘hot spot’ (bright white) on a MRI, but
there are no physical signs of deterioration.
There are also areas of the brain which control the production of
neurotransmitters, cognition, memory, meanings of words and
associations and vision. These areas may suffer greatly, but to the
observer, whether it be family or medical types, there does not appear
to be any further damage.
Unfortunately, due to our previous levels of ability and capability we are aware of
changes in cognition, visual disturbances and so on, but because these
things do not require walkers or chairs they are the ‘silent’
disabilities, and arguably often the most painful to live with.
While treatments offered to us do not promise a cure, there is hope in
obtaining a generalized plateau or slowing of the disease progression,
due to treatment. In the meantime, some disabilities, symptoms and
syndromes regularly plateau. Just because we may have a decline in
activity or ability, it does not mean that this is the ‘end’.
It is perfectly possible that many progression areas will arrest
themselves. In other words, while some symptoms come and stay and
gradually worsen with time, until the feeling, use, or sensation is
lost. There may always be the potential for a particular disability or
symptom to plateau and never worsen further.
There is always the fear for example, that visual disturbance will result in
blindness, speech disturbance will result in becoming mute and weakness
in arms and legs lead to quadraplegia. This rarely happens – invariably
one or other area may be the most active of all and continue to do so,
whereas other areas may become dormant. This affords us the opportunity
to re-learn skills lost.