- MS is Multiple Sclerosis, which is a demylenation of
the nerves (more on that later.) This mainly takes place in the brain or
spinal cord. This is about a real-life family member. To protect her identity
we'll call her Mary. Most people hear the letters MS, and immediately think
that someone must be in a wheelchair. This is the biggest and most insulting
myth there is. I will focus on Mary's condition here simply to help people
understand the truth of this utterly horrific disease. She can still walk,
but quite often not without help. Her home has a cane and a walker like
the elderly use, but Mary is just 50 years old.
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- The real agony of this disease is inside Mary which she
deals with around the clock, and it is not usually visible to others. MS
is considered incurable by insurance companies and the mainstream medical
profession. (Please don't write me about alternative cures. That's already
being explored by Mary.)
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- About 1/3 or more of MS patients have a searing, chronic
debilitating pain that makes patients like Mary literally scream in agony
at times. She learned many years ago before the perils and hazards of MSG
were widely known that even trace amounts of the food additive created
searing, full body pain. Emergency room doctors are not trained to handle
or treat MS, and are unaware of the various drugs neurologists use to manage
it. Another hidden terrible truth about MS is that many patients take their
own lives, because the disease creates a living hell. Patients don't die
from the disease but usually from complications it creates according
to doctors.
-
- We won't get into the different forms MS has, which
only doctors can diagnose and categorize. That isn't the main purpose
of this essay. The purpose is to give people a clearer idea of what the
disease is like, and what to expect if the painful version of it hits you
or your family. This may be somewhat upsetting to some readers.
-
- A year or two on powerful painkillers like Percoset
no longer worked for Mary to manage her agonizing pain. Percoset
may knock someone senseless or put them to sleep. With Mary, these
drugs no longer work and are like taking an aspirin. Doctors only
prescribe a Fentanyl transdermal pain killer patch to patients who become
Opiod drug tolerant to regular pain-killing drugs like Percoset.
-
- Today, Mary uses a special pain patch which comes in
8 different strengths. Mary's patch is 50 micrograms (50 millionths of
a gram) is just one up from the weakest strength of 25 micrograms. This
patch adheres to dampened skin with only 30 seconds of light pressure,
and must not get wet. Swimming is out of the question. Medical first aid
tape around the edges only lasts long enough for a quick shower and no
more. The patch is supposed to last 3 days- but actually lasts about two
days. According to Mary's doctor, this patch is 100x the strength of Morphine.
It can never have a refill as it is a very powerful narcotic. A new prescription
must be picked up in person at the doctor's office.
-
- So what is demylenation about? First, it's important
to know that the inside of the body has about the same salinity as saltwater.
This includes the cerebral-spinal fluid which flows in the spinal column
and around the brain. And being salt water, it is also highly conductive
to electricity.
-
- Demylenation is similar to stripping the insulation from
insulated electrical wire. Signals cannot be sent to where they should
be going. This is true whether it's just a fraction of an inch in the brain,
or whether it's several feet down a nerve in the spinal-cord. Any compromise
in the nervous system's myelin (or "insulation") effectively
short-circuits the nerve's signal to the saltwater in the body.
-
- This is similar to connecting a hot (live) wire to ground
from an outlet in your home. In your home, a circuit breaker will trip.
But in your body, a part of your anatomy will fail to work correctly. The
internal salinity to tiny microvolt nerve signals (about one-millionth
of the voltage of a flashlight battery) is similar to opening up a section
of a telephone cable on a telephone pole, separating each of the wires,
stripping a tiny amount of insulation from each wire, and then plunging
them all into a tub full of liquid mercury. This will disconnect thousands
of phone calls and internet connections. The liquid conductive mercury
is analogous to the saltwater all through the human body. But in
the case of the human body, the demylenation does not usually reverse so
the nerves cannot be "re-insulated." Instead, the damage just
gets worse over time.
-
- When demylenation happens in the spinal cord, muscles
can weaken and even stop working. They do not receive sufficient electrical
signals to work properly. This is the type of MS that puts people in wheelchairs
when voluntary muscles in the neck, trunk, arms and legs stop working.
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- When demylenation is present in the brain, ANY of the
five senses or any part of the body can also stop working without warning.
Many people rudely tell someone who says they have MS, "Oh, you're
not sick; you're not even in a wheelchair yet." What an insult as
we shall see.
-
- It is through an MRI scan that a definitive diagnosis
for MS is made, coupled with a lumbar puncture (spinal tap as most people
call it) to look for a certain elevated protein. (This MRI scan requires
the use of the controversial contrast agent known as Gadolinium. This is
administered intravenously with a pump.) However, this is the Standard
of Care today and is unlikely to change until another equivalent technology
is available.
-
- On an MRI, fine white threads are visible on the images
which are called lesions. These often extend downward into the brain from
the top surface of the brain. Lesions damage specific areas of the brain.
These can also MOVE from one scan to another over just one year, and increase
in numbers. Ten or more lesions in a patient with MS are not uncommon.
Yet the actual source of these lesions is not well understood by doctors.
It is my opinion only that these may be a form of nanotechnology, or work
like nanotechnology does possessing a rudimentary intelligence.
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- WHAT HAPPENS WHEN THE BRAIN IS ATTACKED BY MS
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- This is probably best explained by showing some of the
actual symptoms when the brain is invaded by MS. In Mary's very early stages,
as far back as 35 years, there is an Alzheimer's-like symptom such as memory
or processing problems. She had trouble remembering all through grade school
which bus to get on after school. In her forties, a hearing condition was
found through testing after Mary realized that one ear was almost deaf.
-
- But testing proved that the ear itself worked just fine
it was the brain that doesn't process the audio correctly. This is
like connecting an expensive microphone to a defective sound card in your
computer. Children and adults who listen to deafening MP3 music with ear-buds
all day have no clue at all how precious their hearing is. That is, until
they find out the damage they have done. Mary never abused her hearing,
and never owned a boom box or MP3 player.
-
- All these symptoms described above took place decades
BEFORE her actual diagnosis of having MS. Her diagnosis of MS came when
she was almost fifty.
-
- A few years after finding out Mary had MS she woke up
one day and found her sense of taste had vanished. This sense didn't partially
return for a month or so. Her hearing in one ear which is almost completely
gone did not come back. Suddenly one day two years ago, Mary's vision became
20-60, essentially making her blind in one eye. Nothing would focus properly,
which could be an indication of a detached retina or other problem.
-
- Two ophthalmologists were stumped by the symptoms as
they had no training on MS or the effects it has on vision. Only neurologists
trained to battle MS in our highly compartmentalized medical world today
appear to remotely understand how the disease affects vision. Of course,
these doctors are almost impossible to reach on short notice.
-
- It is the standard of care for an ophthalmologist to
look into a patient's eye to look for signs of disease or other problems.
But when they see NOTHING WRONG they are stumped. This is because the real
problem is deep in the vision center of the brain. For example, if the
processor in your computer develops a defect it crashes. The human brain
also crashes in a different way, depending on which specific areas are
affected. Brain lesions create the equivalent of a "processor fault"
- which in this case attacks the vision center of the brain.
-
- On some days Mary's lips go numb. She kisses her spouse
or family, and her lips are like soggy wet sponges. Sometimes they return
to normal after a few days if the brain can re-wire around that section,
and sometimes it takes months to heal. Even Mary's sense of smell can disappear
for weeks or months. Her tongue was recently numb for months, and when
one day the feeling partially returned Mary was in pain. She had been biting
her tongue quite regularly while eating and was completely unaware of it.
-
- To date, just five years of being diagnosed with MS,
every single one of her five senses has been seriously affected in one
way or another. Some have not returned. For example, Mary can put her hands
in scalding hot water and not feel the damage being done. Her home's water
heater had to be reduced to warm to prevent her from burning her hands.
-
- A family member accompanies her to doctor appointments.
Her mental cognitive abilities often fail her, and she has trouble keeping
things straight. All this is incredibly painful to her husband as he watches
her going down hill, a little more each day.
-
- Two days ago Mary was placed on oxygen around the clock.
A sleep study showed that she stopped breathing in her sleep, and her overall
oxygen level is unsafe. An oxygen extraction machine was placed in her
home which runs around the clock. It removes oxygen from highly filtered
air, compresses and concentrates it, humidifies it and sends it down a
46ft. long length of vinyl tubing to her. Mary can move about the house
with it. This machine is far from silent, and resides in her kitchen so
Mary and her husband can sleep.
-
- A four foot tall oxygen cylinder now resides in her living
room, and is used in the event of a power failure. It provides just 24
hours of oxygen. Smaller portable cylinders are used for travel. Trips
must be planned for the time each cylinder provides. Each cylinder has
2,000 pounds per square inch of pressure, and cannot be stored near heat.
You cannot simply put extra cylinders in your car for a long trip
this could be extremely dangerous in the hot sun.
-
- Mary does not look like her age, and in fact looks like
she is about 30 yrs. old. Perhaps it is her alcohol and tobacco free lifestyle
that keeps her looking so young. Few who meet her even believe she has
grandchildren, until she shows them pictures. Mary's recent first
outing on oxygen to a large local restaurant was just another adventure
for her. People stared in disbelief that someone who looks so young as
she does, could be on oxygen. She is a very brave lady, and went about
as though nothing was wrong while pulling the oxygen bottle cart behind
her. This takes far more courage than most people realize.
-
- There is also another aspect to this attack on the brain.
On some days, she literally cannot get out of bed because of being so weak.
Her husband must carry her to the bathroom and then to wherever she wants
to go. This problem has been known to last for several days.
-
- Mary also has to deal with painful fibromyalgia, type
2 Diabetes and arthritis. She may live close to a normal lifespan according
to her doctors. Her medical care now costs several thousand dollars per
month - for the rest of her life.
-
- What is the most insidious part of MS? Patients are fully
aware and alert of their medical condition unlike some other brain diseases,
and what MS has done to ruin their life. It creates a terrible frustration,
which is so severe that patients often require psychiatric help. The media
never talks about anything shown here, and never reveals how many patients
take their own life because of the agony of the disease.
-
- Estimates are that about 10 million or more Americans,
whether diagnosed yet or not, have this disease from hell.
-
- It's easy to see why patients suffering from it would
take their own life, especially if they cannot afford sufficient medical
care and insurance to make the disease even remotely tolerable. Mary and
her husband spend thousands every month just to manage the disease. They
are exploring alternative cures as well.
-
- In many ways MS is far worse than cancer. With cancer,
in about a year patients will either get better or know the end is coming.
-
- Not with MS it just goes on for decades throughout
life.
-
- The quality of life of a patient with MS (and to
a large degree, their sanity) is directly related to how good their
health insurance is, and how much money is available for making copays
for monthly doctor visits. Some of these visits are mandatory to continue
receiving pain patches and other medication. Further, funds must be
available for making copays on numerous prescription drugs and for alternative
therapies. Without pain killers, this type of MS makes torture like waterboarding
look painless. As bad as that torture is, it doesn't last a lifetime as
MS pain does. Also required are regular liver function tests to make
certain drugs are not causing damage.
-
- MS IS the ultimate disease for reaping great profits
in the medical community. And for drug companies, too.
-
- Nothing in this essay is intended to diagnose, treat
or cure any disease.
- Please understand I am not a physician and cannot
give out medical advice.
-
- Ted Twietmeyer
- www.data4science.net
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- <mailto:tedtw@frontiernet.net>tedtw@frontiernet.net
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