The Problems associated with MS:
a personal view
by Donna
Multiple Sclerosis is one of the most common
diseases of the central nervous system. MS is an inflammatory demyelinating
condition. Myelin is a fatty material that insulates nerves, acting much like
the covering of an electric wire and allowing the nerve to transmit its
impulses rapidly. It is the speed and efficiency with which these impulses are
conducted that permits smooth rapid and coordinated movements to be performed
with little conscious effort. In Multiple Sclerosis, the loss of myelin
(demyelination) is accompanied by a disruption in the ability of the nerves to
conduct electrical impulses to and from the brain, and this produces the
various symptoms of MS. The sites where myelin is lost (plaques or lesions)
appear as hardened (scar) areas. In Multiple Sclerosis these scars appear at
different times and in different areas of the brain and spinal cord--the term
Multiple Sclerosis meaning, literally, many scars (WMS). Multiple Sclerosis is
not contagious, and is not considered hereditary, although if a parent has MS
you are 40% more likely to have it. It is not yet known why (WMS).
The effects of Multiple Sclerosis can be from
relatively minor physical annoyances to major disabilities, including
paralysis. Some of the effects are loss of muscular coordination, weakness,
numbness, vision disturbances, and bladder and bowel problems. These symptoms
take on a variety of forms and come and go spontaneously, sometimes lasting
days, or months, or even years. Sometimes these effects become permanent (MSS).
There are four different types of MS:
- Benign MS in which there is one occurrence and
there is no permanent disability. About 20% of MS cases are of the benign type.
- Relapse-remitting. This category refers to
on-again, off-again cycles of attacks and remissions. Cases of this type
involve sudden and strong debilitating attacks followed by periods of almost
total remission. About 25% of MS cases are of this kind.
- Relapse-progressive. In this type, attacks are
less severe, but the recovery is less complete. The cumulative effect of many
cycles of attacks slowly leads to some degree of disability. This is the most
common form of MS; about 40% of MS cases are of this kind.
- Chronic Progressive. This form of MS quickly
becomes disabling and has no periods of remission. About 15% of MS cases are of
this kind (NMSS).
The problem that I find to be the biggest, is the
problem of diagnosis. Because it is a very long frustrating process. Having
gone through this myself I know that going through all of these tests, and
still not having an answer can be extremely stressful. The patient must first
begin with the basic MS tests, which are MRI (Magnetic Resonance Imaging), LP
(Lumbar Puncture), and EP (Evoked Potentials). These tests are ordered after an
extensive physical exam by a neurologist, if MS is suspected.
An American Scientist, Edward Purcell, and Felix
Bloch first demonstrated the MRI in 1946. The MRI is a test that is run by
creating a magnetic field, which creates the detailed pictures of the brain.
This test has been found to be far more informative than the traditional CAT
Scan (Rosner 50).
The Lumbar Puncture is a simple test in which
fluid is removed from the spine for testing. Since the needle is inserted below
the spinal column, it is of little risk. The only major side effect of this
test is a tremendous headache that may last a few days after the test. Lying
down for several hours after the fluid is drawn, however, lessens the
likelihood of getting the headache (Rosner 48).
The Evoked Potentials is the brain's electrical
response to outside stimuli. Sounds and pictures stimulate the electrical
current of the brain. Also electrodes are attached to certain nerves along the
limbs, thus stimulating a response. The brain waves are recorded and studied to
see if the electrical current from stimuli to the brain to the body part is
working effectively (Rosner 49).
The problem with these tests is that even though
these are very good tests, with remarkable accuracy, they can be inconclusive
during early stages of MS. The MRI in itself is a wonderful tool, but in early
stages of MS, the Myelin is able to repair itself (to a certain degree), and
this makes the plaque, or lesions, very difficult to be seen on the MRI. The LP
is also a wonderful tool, but MS will only show in the spinal fluid while it is
active, or during an attack. Therefore, this test can also be
inconclusive.
Once all of these tests have been performed, if
they come back negative, or no MS is shown on any of these tests, then the
neurologist can rule it out. The problem with this is that sometimes people do
in fact have MS and cannot receive a diagnosis and begin treatment. It
sometimes takes many years for it to show up on the tests. Also, doctors are
very reluctant to tell young people (the most common age for the onset of MS is
20-35) that they have this incurable disease in the prime of their lives.
Usually people of this age group are just starting families and careers. Now
doctors are with having to find out what the problem is. This means many, many
more tests. If nothing else is found after extensive testing, which usually can
take six months to a year, then the neurologist may go back to the first
impression of MS. At this point, the doctor would most likely wait until he/she
can establish two separate attacks. This also could take some time.
Another problem with diagnosis is that MS is a
very complex and unpredictable disease. Symptoms may come and go spontaneously;
therefore, this makes discovering causes very difficult. Many patients have
been referred to psychiatrists because when no cause is found, Neurologists may
find that it could be due to stress, or some kind of psychological problem. In
the earlier years of this disease, it was very common for doctors to call these
series of bizarre symptoms psychosis. Treatment available varies. MS is very
difficult to treat and to study. The reason for this is: The cycling of attacks
and remissions makes tracking the course of the disease and determining the
effectiveness of a given treatment especially problematic. Remission could have
happened on its own, or it could have been due to the medication. There have
been double blind tests done to try to decide which was the cause. Double blind
testing involves a group of people who are given both the medication and also a
placebo. The doctors performing the study do not know which patients received
the placebo or the medication. These tests are currently taking place, and it
is not yet known what the response is.
In general treatments are only effective in
treating the symptoms of MS, and only to a limited degree. Much more research
is needed to find better treatments, or possibly a cure.
I have personally spoken to a number of people
who are diagnosed with MS, and they all seem to have a similar story. They all
suffered from years of symptoms, with no diagnosis. For example I spoke with
someone on the Internet named Rolf. His story was much like many of the others
I had heard. He began having symptoms of severe weakness in his right leg. It
had gotten so bad that he couldn't walk. He underwent the series of tests, and
left with no diagnosis. He had gotten better, and a short time later the same
thing occurred and he once again was admitted to the hospital for extensive
tests. He again left with no diagnosis. The symptoms have come and gone again
over the years and there is still no answer as to why. He does believe that it
is MS but with the difficulty of diagnosis he is forced to just live with the
pain, and suffering. He told me "There must be lots of people like us out
there, all craving for more or more satisfactory information, I reckon. I think
one of the most difficult and frightening aspects of MS is the fact that little
is known about its origins, how it can be treated and perhaps above all, how it
can be diagnosed without a doubt and within reasonable time." Many of them
were dismissed, and taken as having stress or other psychological problems.
After years of suffering, they would finally have a MRI or LP come back
positive. Some of them never have. I have spoken to people who are no longer
ambulatory due to paralysis and still have all negative tests. Much more
research is needed to find the answers to all of the questions around this
enigma. I hope that, in the future, not only will a cure be available but also
knowledge of the cause and prevention.
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