There’s no such thing as benign MS

The MS specialist I recently consulted for a second opinion was terrific. She was very thorough, a great listener, and she genuinely seemed to care.

I loved everything about her – except one thing: her liberal use of the term “benign MS.”

She’s not the first to characterize my illness in this way. My own neurologist has done the same. And on the surface, it would seem to be an apt description. Apart from a drop foot, I have no mobility issues and I’m not visibly disabled in any way.

Anyone with a score of 3.0 or less on the Expanded Disability Status Scale (EDSS) at least 10 years after the onset of disease has traditionally been labelled “benign.” And technically, I fall within this category. After more than 20 years of living with this illness, I’m a 2.5 on the EDSS – where 0 means no disability and 10 means death. There’s no question that I’m doing well.

But at the same time, I’ve been dealing with a range of invisible symptoms that have crippled me in other ways:

Depression and anxiety

In my early thirties, I began to have problems with my sleep. I couldn’t fall asleep or stay asleep, even when I was exhausted, and I was waking up countless times in the night with an urgent need to pee. This chronic sleep disturbance wrecked havoc with my ability to work as a freelance writer. The less I slept, the more anxious I became about my ability to perform; and the more anxious I became, the less I was able to sleep. Round and round I went in a vicious downward spiral that eventually culminated in my hospitalization for a panic disorder and depression. And when word got out that I was being treated for a mental illness, I lost clients and it took me years to re-establish myself professionally.

Bladder problems

Around the clock, my bladder is on overdrive. During the day, I’m always looking for a washroom. And at night, the urge to pee disrupts my sleep and I’m up and down like a toilet seat. For years, I’ve been taking a medication to calm my bladder, and that has helped considerably. But my dysfunctional bladder still interferes with my daily activities. There are things I don’t do and places I don’t go when I know I won’t have access to a washroom. And it’s getting worse. Not only do I have to go more frequently, but I’m having more trouble emptying my bladder when I do. I may have to start self-catheterizing soon – and the prospect of that is daunting.

Cognitive impairment

I’ve always considered my brain to be my greatest asset, but MS has been chipping away at it bit by bit. My thinking has slowed, I have problems with my short-term memory, and I find it hard to concentrate. I have to focus on one thing at a time – and even then, I’m easily distracted. I can’t read, think or carry on a conversation if there’s any background noise, and I often struggle to pull my thoughts together even when it’s quiet. It takes me longer to learn new things and to process information – which makes it tough to work as a freelance writer. I rely on my brain to do what I do, and it’s failing me. As a consequence, I’ve lost confidence in my abilities and I only write for my own satisfaction these days. Trying to meet other people’s deadlines – with a brain that is working at half capacity – just provokes too much anxiety.

Fatigue

Fatigue also makes working difficult. Some days, I feel like my body has been pumped full of lead. Every part of me feels heavy. Every movement is an effort. Even picking up the phone to call a friend or lifting my arms to shampoo my hair can be a challenge. People who haven’t experienced MS fatigue equate it with normal tiredness. But it’s not the same thing. Not even close. It’s a feeling of utter depletion that can hit you out of the blue – even in the morning after a good night’s sleep. In the beginning, my fatigue would come and go, and I’d have long periods of time when I’d feel absolutely fine. But now it’s a constant presence – a weight that I carry with me everywhere. There is always a limit to what I can do, and a penalty when I exceed it.

Vertigo

Until recently, I’d never experienced vertigo and I considered it a less significant MS symptom. But after experiencing two bouts of it last summer, I have to say that no other consequence of my MS has been more debilitating. When you can’t even roll over in bed or stand up without the room spinning, or feeling sick to your stomach, it’s impossible to do anything. I couldn’t work or do any household chores, I couldn’t drive or go anywhere on my own. And I couldn’t exercise or enjoy my favorite pastimes. Everything was on hold, until the swirling feeling was gone. I have never had a more disorienting, disabling, and frightening experience – and I hope I never have it again.

The term benign MS implies something that is harmless or without effect. A disease course that is mild and without significant consequence. But much of the impact of MS is unseen. To attach this label to those of us whose challenges are invisible negates our experience. And minimizes everything.

It’s a discouraging term that neurologists should scratch from their vocabulary. I don’t appreciate my MS being dismissed in this way.

Tell me I’m lucky. Describe it as mild. But please don’t call it benign.

Some things to consider if you’ve been told you have “benign” MS:

  • If your MS is relatively mild, be thankful. But don’t be complacent. There’s no guarantee that it will remain that way.
  • Your condition today does not predict how you will do tomorrow. You can progress in disability or transition to secondary-progressive MS, just like anybody else.
  • If you’re thinking about postponing treatment until your illness worsens, bear in mind that irreversible nerve damage can occur very early in MS – sometimes before the first symptoms appear. And disease activity can increase and progress without any clinical signs.
  • And if your physicians tell you you’re doing well, when you’re feeling anything but fine, encourage them to do a more thorough assessment of all of your symptoms – not just those evaluated by the EDSS. Other instruments are available to measure less obvious problems like depression, fatigue and cognitive impairment, and their use will ensure that the full impact of your illness is addressed.

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STOP this ride! I want to get off!

Lately, my life has been revolving.

“Like a circle in a spiral, like a wheel within a wheel
Never ending or beginning on an ever spinning reel”

The world swirls around me every time I move my head or change position – from sitting to standing or lying down in bed. I roll over and the room spins. Get up and the room spins. Bend down and the room spins. Turn my head and the room spins.

“Like a snowball down a mountain, or a carnival balloon
Like a carousel that’s turning running rings around the moon”

I grab the furniture to steady me. Run my hands along the walls. Bang my way through doorways. Grip the handrail on the stairs.

My movements feel strangely uncoordinated. My stomach is upset. I don’t know when or where it will hit me – or even IF it will come again. A cross between an amusement ride and Russian roulette.

I can’t drive. Or go anywhere on my own. I’m not able to do the groceries, the laundry or any other household chores. I can’t play the piano, take pictures with my camera, go for walks with my husband or swim. And even reading is a challenge, when words are dancing across the page.

“Like a clock whose hands are sweeping past the minutes of its face
And the world is like an apple whirling silently in space”

I’ve had dizzy spells before, and they’ve stopped me momentarily. But I’ve never experienced this kind of chronic vertigo before. Nor did I appreciate how debilitating it can be. It not only limits every aspect of your daily life and makes you feel sick. It shakes your confidence in everything.

When you can no longer trust the ground beneath you, or believe that your surroundings are firmly anchored in place, you feel tentative, anxious and unsure. It’s like you’re walking on eggshells all the time, expecting something to break. Falling becomes a very real concern, not an intangible threat. This is the first time since being diagnosed with MS that I have felt unsafe. Vulnerable to injury. On high alert.

And the fear it breeds is more pervasive than that. As the spins begin to mercifully subside, I wonder: Will they come back? And if so, when? Is this seasick feeling that I’m left with my new normal? Will I ever feel solid again? And is this new symptom a sign that my MS is progressing? Am I transitioning to secondary-progressive MS?

These thoughts go round and round and round in my head on a never-ending loop.

“Like the circles that you find in the windmills of your mind.”

Some things to know about vertigo:

  • Many people with MS feel dizzy, light-headed or off-balance. But vertigo is an especially disconcerting form of dizziness that involves a sensation of movement in relation to one’s surroundings. It’s a whirling or spinning feeling.
  • It affects about 20 percent of people with MS.
  • It can be caused by damage to the vestibular system, which coordinates visual and spatial information to control our sense of balance. Lesions in the brain stem and cerebellum are particularly problematic.
  • It’s important to rule out causes other than MS before treatment, as vertigo can also result from infections, debris or inflammation in the inner ear, Meniere’s disease, strokes or tumors, head and neck injuries, migraines and medication side-effects.
  • Vertigo is sometimes accompanied by other symptoms, including visual disturbances, hearing loss or ringing in the ears, walking and standing difficulties, nausea and vomiting.
  • There are some drugs for treating vertigo. These include over-the-counter motion sickness medications, such as dimenhydrinate (Gravol, Dramamine); prescription drugs, such as ondansetron (Zofran) and meclizine (Bonine, Antivert); and corticosteroids.
  • Vestibular rehabilitation with a trained physical therapist may be helpful if the spinning is provoked by changes in body position.
  • Safety is a real concern with vertigo. The risk of injury is high. Don’t drive. Be extra careful on the stairs. Use a mobility aid, if necessary. Take your time moving around and changing positions. Turn on lights when it’s dark. Remove tripping hazards. And above all, SIT DOWN until the spinning sensation passes.

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(With credit to Alan and Marilyn Bergman for the lyrics to “The Windmills of Your Mind.”)