When people hear the term
"Multiple Sclerosis" they generally think of people who have relapses ,
followed by periods of remission. This form of the disease is called
Relapsing Remitting MS (RRMS)and is the most common form of the
illness. When people have a relapse, they have an exacerbation of the
illness (often called 'attacks or 'flares') they may have partial to
full symptoms of blindness, paralysis and disability or varying
degrees. Once the 'attack' is over, there is often a complete or
partial recovery of function, this is the remission phase of the
disease. With partial recovery some symptoms or disabilites remain.
With each new attack, and recovery there are additional worsenings,
therefore in this manner RRMS is a progressive disease by way of
accumulation of disability. That is, becoming a little more disabled
with each relapse/remission period. It may take many years or in many
people, not at all, to become seriously disabled requiring a
wheelchair. Some people can go into prolonged states of remission where
there is little or no disease activity.
Primary progressive ms,
is often thought of as the most severe form in the sense that from
onset to total disability is the shortest time span. However, even
within this category there are differences in both rate of progression
and severity of progression. Research has shown that MRI results
indicate that people with primary progressive MS often have far more
lesions and more widely spread throughout the CNS than any of the other
types of MS - including SPMS.
PPMS is characterized by an increasing
steady decline in motor and often cognitive abilities. There is none of
the characteristic "remissions" as experienced by people with RRMS. At
best there may be experienced a "plateau" where the individual does not
get any better but for a time at least the current symptoms do not
worsen. A plateau is usually short lived before the illness resumes the
progressive process. Once symptoms appear they generally continue to
become increasingly more frequent and severe. For example, one may
experience some "different" kinesthetic sensations - in other words
feelings on the skin of the hands, arms, feet, legs etc., which the
person describes as "unusual". These sensations over time may become
more pronounced and are often identified as "tingles", then further
along as "pins and needles". Sometimes the feelings then progress to
either pain or numbness or both. For other folks or even other areas of
the body in the same person, the symptoms may begin as numbness or
tingles or pins and needles - it depends on the extent of damage and
location of damage to the myelin coating and or nerves themselves.
Another example is with the arms or legs may feel "heavy" or swollen at
first, then become increasingly unresponsive and may become paralyzed.
How quickly this all occurs differs from one person to another and even
for an individual and while some situations, such as prolonged illness,
intense stress or exhaustion, may hasten the process, no one is quite
certain why. For example, some individuals, from diagnosis to total
disability may be as quick as 2 years, others 4, or 10 or more.
Where the worst of the progressive
symptomology appears, depends on where the lesions are located within
the CNS. Naturally spinal lesions will result in a greater motor
deficit. Because PPMS results in both a greater quantity of lesions and
more widespread disbursement, people with PPMS accordingly show a
greater range of symptomology than people with RRMS do. That is, the
most common symptoms reported by people with ms are fatigue, numbness,
tingling, pins and needles, cramps, spasms, visual problems, memory
problems and difficulty with concentration and attention, spatial
orientation and coordination, bowel and bladder and sexual dysfunction.
For people with RRMS, they may experience some of those symptoms, for
PPMS folks they almost all develop all of the symptoms at some time.
Consequently, total disability follows as more deficits occur.
Of all the types of MS, PPMS is the
least common type and depending on who or what you read, the percentage
changes also - for example 5% to 10% of all people are diagnosed PPMS.
While there are many drugs and treatments being trialed, there is to
date no known totally effective treatment for PPMS. It is hoped that
with the continued research that a drug or combination of drugs may be
useful in halting or slowing the progression. There have been some
encouraging results with the use of chemotherapy (for example Cytoxan)
and steroidal treatments in slowing the progression in some people. The
theory for using chemotherapy is that MS is assumed to be caused by an
over active immune system. By depleting the white blood cells, it is
hoped that the immune response will either not occur, or not occur with
as great a response. Therefore, minimizing the damage and slowing the
progression of the disease.
Transitional Progressive MS
(TPMS) is a term sometimes used by researchers as the period of time
during which a person is progressing from Relapsing Remitting MS (RRMS)
to SPMS. Exacerbations still occur, however, rather than a complete or
partial recovery with the symptoms remaining constant, the person
begins to progress. Symptoms/disabilities "gained" in the exacerbation
continue to worsen rather than remaining static. This period of
transition may last weeks, months or most commonly 2 years.
Secondary progressive MS
(SPMS) is characterized by a pattern of Relapsing Remitting MS in the
beginning. This may last for quite some years or only 2 years...again
no one is able to predict how long a person may remain RRMS before
progressing to SPMS. Approximately 40 to 50% of the relapse remit type
of MS sufferers go on to become secondary progressive. It is also not
known what triggers cause the cessation of remission and the onset of
the progression of the disease. Once an individual becomes SP, the
pattern of symptoms, severity and disability is similar to that of
Primary Progressive (for people without exacerbation). People with SPMS
who also have exacerbations do not have a remission period after
exacerbations and show a pattern of progression between exacerbations.
If there is an "upside" to SPMS
compared to PPMS, it is that it may take years of relatively
uncomplicated, able living with the RR pattern before the onset of
progression. Again it must be noted that people do vary in their rate
of progression and severity of disability. Also the quantity and
severity of relapses and time between "flares or attacks" also varies.
With the advent of the ABC drugs, it is hoped that less people will
progress to SPMS, and that the deterioration and increase in
symptomology will also be alleviated somewhat through treatment. In
other words we hope that researchers may develop treatments to
drastically slow the disease and thus increase the quantity of life
while increasing the quality for the individuals. New studies have also
shown that the sooner an individual with SPMS is treated with
Betaseron, the greater the potential there is to slowing the
progression and subsequent disability.
PRMS or progressive
relapsing ms (like PPMS) is a relatively rare form of the disease. The
individual is initially diagnosed as having PPMS and as much as up to
10 years later, may have an exacerbation. It is characterized by the
similar pattern of severe exacerbation, such as blindness or paralysis
that people with RRMS experience. However, rather than returning to
full recovery of functioning with some residual symptoms - such as
tingles, numbness, as is the case with RRMS, the folks with PRMS show a
pattern of progression between exacerbation's. It is probably best
understood as being like PPMS only with the major exacerbations of RRMS.