Kicking MS to the Curb steps out of the box of multiple sclerosis with determination and humor. The MS journey brings challenges and concerns, stumbles and successes, triumphs and trouncings. We celebrate races run and battles won. And we stumble, reel and rise to try again.
Throughout, the orange thread traces our dogged determination to continue placing one foot in front of the other for as long as possible - until we win, until healing comes, or until the medical miracle is found.
Living with M.S.
"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become. Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)
Multiple sclerosis warriors know the drill. We understand
that this thing is still incurable, although we hold onto hope that a cure is
coming, just around the bend. We have read the research, explaining how MS
basically means our bodies are betraying us. Our immune systems like to go into
overdrive, attacking us without just cause.
Toss in a real infection, and the sleeping giant that is the
immune system rises with a vengeance. Then we can be in real trouble. When we catch a cold, the flu, or another illness, we
sort of become sitting ducks for full-blown MS exacerbations.
A slight bout with sickness just might toss any of us into
MS distress. On the other hand, stress also aggravates MS. That means worrying
about germs can be a problem too.
So what do we do about handshakes? (Read: Health
and etiquette: Should handshakes be handed off?) How about handling
shopping carts at the grocery store? Do we recoil at the idea of touching elevator
buttons, sink faucets, doorknobs, stair railings, or light-switches? (Don’t get
me started about airplane seats, arm rests, and tray tables.)
Maybe we shudder to think about pressing our fingertips on
the control panels of the treadmill, stationary bicycle, or rowing machine at
the gym (if we are still fortunate enough to be able to work out).
Personally, I try not to freak out about germs, but I am
surely conscious of the possibilities of infection. I wash my hands frequently.
I carry a tub of handy cleaning wipes in my car and tuck smaller pouches of
them in my gym bag and my handbag. I also keep little tubes of antibacterial
hand sanitizer around.
And I pray a lot. Honestly, sometimes I wonder if I pray more
about food safety than provisional gratitude, when we say grace before eating. I
want to work on that balance, but clearly both prayers are important.
Pixabay public domain photo.
What about mixing with sick people?
I think it’s important for folks to understand that the MSer
(and anyone else with an autoimmune issue) is not acting anti-socially when
canceling a get-together or declining an invitation. If we telephone or send
cards, instead of visiting, when a friend or loved one is hospitalized, it
doesn’t mean we care any less.
And, if we show up, we’re not being snobby or stand-offish,
if we stand back from the hugging or give you a friendly nod in place of a
handshake, especially if you are coughing or sneezing or complaining about
We really just cannot afford to be laid up for days or weeks
with an MS relapse after catching whatever you have. We want to be friendly. Most
of us honestly desire to reach out. But we have learned (usually the hard way)
that we have to guard our health.
Because with MS, our own bodies really are out to get us, especially
when we’re under the weather.
This week, for example, I am wrestling with MS-related
balance issues, nearly constant vertigo, and intermittent sudden-onset fatigue
that knocks me flat several times a day. I don’t have stomach flu or a raging
head cold. So far, the flu-ishness is just a matter of stuffy head, all-over
achiness, and several county-clearing sneezes each day. But the harbinger is
Something’s a-coming. The MS MonSter is not on the porch yet.
But something about this whole deal rings a bell.
Call it a see-saw, a zig-zag, or a journey of ups and downs.
Living with multiple sclerosis can be any of those things. The MS MonSter rages
and rests, especially for those of us who battle Relapse-Remitting MS (RRMS).
Honestly, sometimes I feel like toasting, but other times I’m
just toast. On some days, I have enough wherewithal to accomplish a whole lot.
On others, I’m almost crying “Uncle” from the get-go.
Created by this user with public domain photos
Maybe you know the feeling.
That’s how MS is.
After nearly a decade of personal war against this chronic
neurological condition, I often think I ought to be more adept at predicting
the battles. But I’m not. The MS MonSter doesn’t telegraph his attacks. He
Sure, sometimes I overdo it, pushing my own limits on my
best days. Isn’t that pretty common among MSers? We’re so thrilled to feel
less-than-bad that we find extra energy. So we do more and more and more. We
find ourselves asking, “Gee, is this how the rest of the world feels all the
Pain-free moments are
Days when our balance and muscle obedience and vision and
other faculties perform satisfactorily bring us joy and motivation to get up
So we go and go and
go … until we stop.
I’ve done it again.
Recently I spent a wonderful high-energy weekend with some
friends. We stayed up late each night. We arose early each morning for
activity-filled days. We ate snacks and desserts and extra-rich foods. We
talked and laughed and sang. It was a blast.
But it took me almost a week to recover. I sacked out early
for several nights in a row, after returning home.
The next weekend, I ran in a 5K. I met my current usual
running pace and received a place medal in my age division.
I felt like toasting.
But the next day, I was toast. Totally spent.
After all these years with MS, I still find that a little
baffling and bewildering. I routinely run farther than a 5K. But the race
knocked me out. Maybe it was the winter weather we faced, including running in
gusty winds. Perhaps the excitement drained my energy, although I sure enjoyed
it at the time. I may have experienced an adrenaline drop when it was over. And
I was probably still somewhat fatigued from the previous weekend’s festivities.
(It’s all about pacing, when you live with MS.)
Clearly, the MS MonSter recognized my vulnerability to an
onslaught at that time.
I was ready for jammies before darkness fell around here. That’s right. Totally toast.
Insights on instantaneous vision loss from experienced individuals
Vision is veritably vital. Just ask anyone who has every
lost his or her eyesight, even for a short while. Optic neuritis is one cause
of such an unnerving event. Having faced this ordeal personally, I decided to
interview several others and compare our experiences.
Let’s look at specific individuals, who have battled sudden
Adapted from PD4Pic public domain photo.
NOTE: Written by this author, this copyrighted material
originally appeared on another publisher’s site. That site no longer exists.
This author (LAN/Kicking MS to the Curb) holds all rights to this content. No
republication is allowed without permission.
What is optic
Basically, optic neuritis represents an inflammation of
the optic nerve, which runs from behind the retina of the eye to the brain.
This results in a rather sudden
loss of vision in that eye. The inflamed optic nerve may swell or even
suffer demyelination, or physical damage, in an optic neuritis episode.
What causes optic
Experts differ on pinpointing the exact cause of optic
neuritis. In many cases, optic neuritis may result from an infection (such as
herpes, toxoplasmosis or sinusitis). It may stem from a neurological disorder,
a nutritional deficiency or even toxic levels of alcohol, tobacco or harmful
Most often, however, optic neuritis seems to be caused by
autoimmune diseases, such as lupus or multiple sclerosis (M.S.). In fact, optic
neuritis has been the most common initial indicator of multiple sclerosis (M.S.)
in currently diagnosed multiple sclerosis (M.S.) patients.
What are the symptoms
of optic neuritis?
Optic neuritis may affect one eye,
or it may attack both eyes at the same time. The condition may be experienced
as a sudden loss of vision, a deficiency in color vision (known as
dyschromatopsia), an inability to discern visual contrasts (light and dark) and
eye pain. The symptoms and level of distress may vary with each individual and
each episode of optic neuritis.
In some individuals, the vision loss from optic neuritis can
be quite instantaneous
and acute, as it was for Brian G.,
of South Africa. “I completely crossed a major highway and caused an
accident, after suffering from severe pain behind my left eye for days. My
vision just dropped in seconds,” he said.
“I could only see things in one dimension,” said Jen C., of Boston, Massachusetts.
“Everything was flat.”
“It felt to me like I was wearing glasses with big
fingerprints on them,” explained Carey
S., of New Zealand. “My optic neuritis changed from black spots to wide
smudges to double vision with lots of black spots in my peripheral vision. I
felt almost like a cartoon character, seeing stars.”
Shannon V., of
Pennsylvania, had a similar experience. “I didn’t have any sort of pain or
tingling,” she recalled. “But I had a line through my vision, kind of like an
optical migraine. I also had a spot that was completely black in the right
“I woke up one morning and opened my eyes to see a distinct
line horizontally across my left eye,” recounted Mary Lou C., of New York. “It was similar to looking through
bifocals, except the top half was normal, and the bottom half was like looking
through a coffee-color stained glass.”
“I didn’t know what it was for a few weeks,” added Rebecca N., of Australia. “I just
assumed it was part of a migraine. MY left eye had a dark ‘C’ shape in it. I
would see, but the ‘C’ was in my vision. Also, it hurt around my temple and
eyebrow when I looked around.”
An individual experiencing optic neuritis for the first time
may imagine a foreign particle may be in one eye. Scott S., of Albany, New York, related this symptom this way: “I
thought I had something in my eye. I kept rubbing it. One day later, I woke to
find I would not see anything in that eye.”
Jodi C., of Fargo,
North Dakota, agreed. “It felt like I had smudged glasses on, and the
smudge didn’t go away, no matter how much I rubbed my eye. Also, I had pain
behind my eye, and bright lights made it unbearable.”
Optic neuritis can be quite uncomfortable, as Krista L., of Boston, Massachusetts,
pointed out. “I had a significant amount of pain over my left eye,” she said.
“It felt like a migraine, but I don’t get migraines.”
Amanda, of New
Zealand, said, “I had a strange aching pain in my eye. Eleven hours later,
I wouldn’t see anything out of that eye.”
In addition, many celebrities have reportedly
suffered from optic neuritis, and even the often accompanying multiple
sclerosis (M.S.). These include author Fox-TV anchorman Neil Cavuto, author Joan
Didion, country singer Donna Fargo, Disney Mouseketeer and movie star Annette
Funicello, actress Teri Garr, singer Lena Horne, country star Hal Ketchum, singer
Alan Osmond, R&B star Tamia, talk show host Montel Williams, and many more.
How is optic neuritis
Optic neuritis is usually recognized by magnetic resonance
imaging (MRI) of the brain. In addition, visual acuity testing, color vision
testing, evoked potential screening and visual field testing may be performed.
Most often, the inflammation of the optic nerve may be seen (after pupil
dilation) with an ophthalmoscope in an eye doctor’s office. The eye pressure
may also be measured.
neuritis is too often missed, when physicians seek simpler explanations for
sudden vision loss, particularly when the condition lasts only for a short
time. Many medical professionals blame migraine headaches or sinus infections
for eye pain and vision deficiencies, overlooking optic neuritis.
“Doctors claimed my experience was the result of a sinus
infection, although it later turned out to be optic neuritis,” reported Shannon V., of Pennsylvania.
Linda N., of
Wisconsin, recounted similar findings. “I’d been treated for an
unbelievable number of sinus infections, over the years, mostly for
behind-the-eye pain. This finally pointed to optic neuritis.”
How long does optic
For most optic neuritis sufferers, vision will return (in
whole or in part) within a three to six weeks. Some individuals may experience
decreased vision, and many will discover they have lost some ability to discern
colors (particularly reds) and to perceive light-and-dark contrasts.
Many optic neuritis patients, particularly those with
multiple sclerosis (M.S.), may find their vision symptoms returning temporarily
with increased body temperature, athletic exertion or stress. This condition
has been called Uhthoff’s Syndrome, commonly recognized among neurologists and
multiple sclerosis (M.S.) patients.
How can optic
neuritis be treated?
Optic neuritis is generally a temporary condition, although many
medical professionals do recommend corticosteroid treatment to hasten recovery
and prevent additional episodes. Usually, corticosteroids are administered
first intravenously (for up to three days), followed by 10 to 15 days of oral
Can corrective lenses
help with optic neuritis?
Eyeglasses and contact lenses do nothing to affect the
symptoms of optic neuritis. In fact, most neurologists recommend patients delay
regular optical examinations during an episode of optic neuritis, as the visual
findings may be distorted during that time.
effects may optic neuritis cause?
Although statistics vary, at least a third of those
suffering from optic neuritis seem to be diagnosed with multiple sclerosis
(M.S.) within a few years of this experience. For many, optic neuritis
represents the first red flag for a neurological condition, such as multiple sclerosis
Optic neuritis may reoccur as well, affecting the same eye,
the other eye or both eyes at once.
For other optic neuritis sufferers, the episodes may be
temporary roadblocks, with full or nearly full vision returning fairly soon.