Multiple
Sclerosis
This is a brief guide to the neurological
disease called Multiple Sclerosis. I have slanted with a personalized angle
to my own affliction to give it a human face rather than as abstract medical
explanation. It is a complex and debilitating disease that still
so little is known about its causes, to some degree its effects, possible
outcomes and possible cures. (of which none proven scientifically
exist). One must always remember with this disease it can go into periods
of remission for years or even decades. Therefore to scientifically prove
that it is "cured" is in fact very difficulty.
What
is MS ?
Multiple Sclerosis known as
MS (multiple = many + sclerosis =
lesions) is a disease of the body's central nervous system,
in layman's terms that is the brain and spinal cord. The "white
matter" tissue is made up of nerve fibres which are used for transmitting
signals within the nervous system of the body. MS is the most common
neurological disease today in the West. Rates of MS do varying wildly worldwide
between ethnic origin and demographic location. Hot spots tend to be in
the cooler climates of the Higher latitudes particularly the British Isles
and Scandinavia, Canada, Tasmania and NZ in the South.
People whom are affected by MS,
develop areas of damage called plaques or lesions appearing in seemingly
random areas in this white matter of the Nervous system. A lesion
occurs when the protective coating of the nerve called the myelin,
is destroyed for a reason as yet really unknown. I liken this removal of
this fatty substance Myelin to removing the plastic insulating coat of
a electrical wire. The result of this is the same - the electricity or
in this case nerve signal short circuits sending absent , wrong or poorly
communicated messages. The result of this is that people with
MS can often suffer loss or altered function / sensation in those
parts of the body where nerve transmissions that are communicated through
the body from the spine and brain.
The actual process
of demyelination of the nerve
Multiple Sclerosis is a very unpredictable
and variable disease that still has medical science baffled to its
actual cause and is often termed "The Mystery Illness". It is also in simplistic
terms a disease where the body's own immune system (for reasons completely
understood at present) will attack the myelin sheath coating of nerves
in an auto-immune reaction as if it was an invading virus. As there
is still so little known about this disease, there are some schools of
thought that believe that MS is in fact an umbrella for several diseases
very closely related with different rates of progression and resulting
disabilities and outcomes.
Depending on what part of the body's Nervous
system is attacked and how severely , the type of symptoms and outcomes
are extremely variable. This can be further complicated by existing neurological
damage in the surrounding area and the general state of progression of
the disease. Due to this extraordinary variation of the disease's
presentation in each individual, charting a prognosis and generalizing
on an eventual outcome becomes extremely difficult. Because of this chaotic
way MS attacks the body in its location intensity and timing, no
two cases are ever the same. For example depending on where in the Nervous
system MS attacks the symptoms can be as varied in location and severity
as complete paralysis of the leg to a tingling of the tongue or diminished
sight.
The distinctive
tell-tale "white spots" - or Lesions on a Brain MRI scan
So
how does MS effect you?
This in fact is a very moot question and
very hard to answer. As the central nervous system is just that,
CENTRAL to the functioning of the body it can be wide and varied. A simple
analogy for MS is to liken it to a car with a faulty "wiring loom" So depending
on what place in the car there has been a breakdown in the wiring system
will determine the severity and location of the fault. Will it be just
the windscreen wipers working intermittently or failure of all the lights.
There however frequently seems to be not a direct correlation between
the severity and size of the lesion , to the its resultant outcome in the
body. Some lesions depending on exact location can be almost benign in
the symptoms. So often people can have had MS in this benign form without
almost noticing it.
2 MRIs of same brain
section
1. Showing brain slice with all lesions
2. Contrast showing Active Lesions as emphasised by injection of patient
with dye
There is no doubt that MS is what is termed
a Chronic Neurological illness. MS is something that will "spot" itself
through the central nervous system rather than blanket cover it,
very rarely do those effected loose or have altered function in all areas.
It is also true to say that generally speaking MS is not a fatal disease,
though its can for many destroy their quality of life. Some people can
end up being severely handicapped with MS with extreme paraplegia, or blindness
or loss of sensation or movement, with others it may be only a severe
and uncomfortable inconvenience.
Spinal Lesion
close to the brain stem
on a MRI scan similar
to my own
It is true to say that MS is a painful
disease and often very unpleasant as it can effect both sensations and
mobility. The list of symptoms a suffer of MS can endure can look truly
daunting on paper (let alone in reality to the suffer!) Yet again it is
infrequent that these conditions are life threatening. Symptoms fall
into 2 basic categories SENSORY and MOTOR.
My
Symptoms: How do they effect Me?
So far I have not had motor troubles, that
is the ability for my body to move in a desired fashion usually caused
by muscular problems. My problems have been so far mostly sensory in nature,
that is altered , diminished or the absence of sensations. This seemingly
dramatic following list of symptoms are those that I continue
to endure in some form, and true to the very nature of MS they ebb
and flood quite erratically. With MS the most dramatic manifestation that
often occurs is severe problems with the legs, walking and gate rendering
many wheelchair bound , o. MS is often something you cant see, as its internal
in sensations. A mistake that many make with MS patients is to say "how
well the look" when inside the can feel like hell! My nickname for it in
this way is the "Hollywood Disease" you can to the outsider appear very
fit and well but internally it can be a very different story in your ability
to live any semblance of a "normal life". This can be a very isolating
factor for the person with MS as it can be viewed be the misinformed that
you are psychosomatic or just lazy or not motivated.
The Face of MS -
me! - Rhuari - 4 months after 2 major MS attacks Oct 2003
My
list of Symptoms:
- chronic disabling fatigue
- numbness, tingling, pins and needles
, burning sensations, "crawling spiders"
- severe stinging
- heat intolerance
- urinary urgency or hesitancy and continence
- bowel spasms, pain ,constipation and
frequency
- aggravated gastric reflux
- "wrestless legs"
- spastically
- cramps
- vertigo and balance problems
- nausea
- blurred and painful vision
- tear ducts that don't work
- slurred speech
- short term memory loss
- lack of concentration
- altered sleep patterns
- tinitus and ear pain
- saliva glands that over work
- dizziness
- facial neuralgia (extreme pain in face/eyes/
teeth)
- cognitive function (that may be more
obvious to others than me!! :-)
As you will note, many of the symptoms
are not specific to MS, but also applicable to a great many
other medical conditions. What makes them special is in the way that they
present and manifest themselves, that makes it abundantly clear that
it is the MS that is causing them. There is in my case, a good
correlation between the positioning of MS lesions and symptoms, however
this is not always the case. For example the Spinal Lesion i have
at C2 on the brain stem is the home of certain nerves that for example
would explain my Ear problems, Facial neuralgia, bladder troubles,
numbness in shoulder arm etc, or the Optic lesions causing eye pain and
diminished vision. Sometimes these symptoms are annoying or uncomfortable
but unfortunately they are often also extremely painful. Neurological pain
is something hard to treat and the better drugs are often prohibitively
expensive or cause great fatigue already a great problem with MS.
Optic Neuritis
lesion on conical
optic nerve, the biggest nerve in the body - magenta
arrow
brain lesion - blue
arrow
Generally I go through periods of "relapse"
this is when the new neurological pathways that have developed since my
last attack of demylenation, start to become more dysfunctional. This "breakdown
in communication" in nerve transmission is when wrong or no
signals are sent to the part of the body they are required. More often
than not, a range of symptoms will start and drift in an out in tandem
or sequentially over a period. Usually this tends to be when I hit a period
of great fatigue. The symptoms, for example muscle spasms or spastic movement
in my legs, or severe pain in eyes may last seconds, minutes or days. In
one's life this leads to a great amount of chaos and can lead to a great
deal of unpredictability and uncertainty. It is important with MS to build
up a resilience to this changeability in ones life, and an entirely new
flexible position must be taken to all activities to allow for this. My
own spontaneous, adaptable and pragmatic nature has given me great skill
in dealing with the effect of MS in being able to minimize its frustration
and impact on my life and happiness and enabling me to make the very most
of my good periods.
The
Course of MS and Diagnosis
There are now 3 recognized paths of progression
with Multiple Sclerosis. (see the chart below). MS is a disease that is
often very poorly diagnosed, with many suffering for many years or
decades without a firm confirmation they have the disease. Sadly
MS is not a disease like Diabetes of Hepatitis, as there is no "definitive
test" that will prove that you have it. (or for that matter that you have
been "cured" ). MS over the years has usually had a "criteria" that
must be met to confirm a diagnosis. At present this is known as the "McDonald
Criteria, as I was diagnosed under. I liken that to be being told its "A
Big Mac, With a Large Fries and Medium Coke with Apple Pie". result = McHappy
Meal or MS!..... In my case my diagnosis was confirmed by having Multiple
( in my case 3 lesions on spinal and 2 brain confirmed), Optic Neuritis,
a "history of medical conditions consistent with MS" and a positive test
on my Spinal Tap where certain proteins are found to be present (that indicate
demyelination. = my McSad Meal ....MS!
This Diagram Charts
the 3 possible courses of MS
Time Vs Neurological
Deficit/Disabilty
Sadly as MS is one of those diseases that
comes and goes randomly and with 3 different form of progression and its
very individual nature it presents in each human being it is in fact quite
difficulty to tell which path your are on. The determining factor in labelling
which form of progression you have is in fact you history over time. Initially
almost every once diagnosed with said to Relapsing and Remitting MS. It
can take up to 10 year after diagnosis to truly know which form of MS you
have.
Treatments
and Medications in MS
This section is underconstruction and well
be completed shortly
Rhuari Hannan
The
MS Society of Australia
Click this logo
for much more about MS, its causes research and treatments
a great organization
that has helped a great deal number of people
and whom have been
invaluable to me
to email me hit the logo
Site designed by Rhuari
Hannan - Wandering Albatross Design
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