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)

Try Amazon Prime for Free


Is MS gonna make me a germaphobe?

Eek! It’s a germ!

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.

Image created by this user on text generator.

Germaphobia is a genuine concern for the MSer.

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 illness.

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 here.

Something’s a-coming. The MS MonSter is not on the porch yet. But something about this whole deal rings a bell.

Feel free to follow on GooglePlus and Twitter. Please visit my Amazon author page as well.
You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.


Life with MS: Sometimes you feel like toasting, but other times you're just toast.

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).

(For more information, read Reviewing the four types of multiple sclerosis.)

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 simply strikes.

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 time?”

Pain-free moments are amazing!

Days when our balance and muscle obedience and vision and other faculties perform satisfactorily bring us joy and motivation to get up and go.

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.

But I’ll be back.

Feel free to follow on GooglePlus and Twitter. Please visit my Amazon author page as well.
You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.


Optic Neuritis: A Look at Sudden Blindness

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 blindness firsthand.

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 neuritis?

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 neuritis?

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 chemicals.

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 corner.”

“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 diagnosed?

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.

Optic 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 neuritis last?

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 steroidal medications.

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.

What long-lasting 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 (M.S.).

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.

Feel free to follow on GooglePlus and Twitter. Please visit my Amazon author page as well.
You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.
Related Posts Plugin for WordPress, Blogger...