Kicking MS to the Curb

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.

Monday

Self-advocacy: When therapy is not therapeutic

Multiple sclerosis pits a person against his or her own body – and sometimes against medical experts.

Ask any of us who battle MS daily, and you’ll likely hear about how our own bodies betray us, as our central nervous systems mutiny against our limbs, eyes, and countless other components. Maybe that’s why it seems extra frustrating when we have to combat false assumptions and unhelpful advice, particularly when it comes from medical professionals we have enlisted to help us.

Ouch.

Recently, my physician sent me for vestibular therapy, explaining that my recurrent (and increasingly severe) vertigo episodes might be traced to benign paroxysmal positional vertigo. Simply described, that’s a condition that arises when inner-ear crystals slip out of place, causing dizziness.

That’s not what’s caused my vertigo.

More than a decade ago, my (now-retired) neurologist/MS specialist attempted the Epley Maneuver on me, simply to rule out BPPV. This little trick involved lying flat (supine) on the exam table, while the practitioner bends and turns my head to one side and then the other.

The Epley Maneuver can work wonders for someone with BPPV. But for the MSer, it can wreak havoc.

Way back when (and again recently), this technique sent me spiraling into vertigo hell for hours.

Fast-forward to last week.

The young physical therapist, apparently specializing in vestibular issues, put me through a full battery of balancing, rolling, and head-turning trials. She set me supine on the flat exam table and tipped the top (head) section downwards by 30 degrees. Adapting the popular 1-10 pain scale, my vertigo went from a 3 to an 8.

In our initial discussion, I had already explained to her that I needed to elevate my head at least 30 degrees whenever on my back (as for an exam, fitness class floor exercises, or a yoga class). I mentioned that I sleep with two pillows. All of these allowances are vertigo-preventative, as I have demyelination in my cervical spine area.

Ever determined, however, she put me through the paces.

Then she concluded that my vertigo was not vestibular-related, but only after I’d endured her full checklist of tests and potentially therapeutic head positions and movements. Even so, she said she recommended repeating the same exercises, intentionally precipitating vertigo, on the chance that might retrain my brain to adjust to vertigo.

Um, what?

Afterwards, I contacted my physician and reported on the experience. I told him I was not inclined (no pun intended) to continue the vestibular therapy, as it only triggered and increased my symptoms and as my vertigo clearly was not vestibular in nature.

Holy moley. My head is still spinning over this ordeal. But I had to find my way to standing on my own two feet (literally and figuratively) to avert repeat occurrences.

Phew! They don’t call us MS Warriors for nothing. (At least, perhaps they should.)

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Image/s: 3 Wise Monkeys at Tosho-gu Shrine, Nikko, Japan, by Ray in Manila - CCA lic.

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Sunday

MS episode: Is it a relapse, a new lesion, or what?

“So you don’t have MS anymore?” a close friend asked, after my latest scans showed no new changes.

Not long after that, one-eye blurriness and various limb tingling and dizziness suddenly hit me. The MonSter of multiple sclerosis reared his angry head again.

“We’re not making this up, folks. Even if we do look too good to be sick.” (Raise your hand, if you’ve heard that one.)

All together now: The absence of new lesions doesn’t mean MS has vanished.

It’s probably an exacerbation. Or it might be a paroxysm. Let’s hope for that one, as it won’t likely last as long. But then, all bets are off, when it comes to the mysterious MS.

An exacerbation of MS (also known as a relapse, attack or flare-up) is the occurrence of new symptoms or the worsening of old symptoms, according to the National MS Society. Their explanation elaborates on this definition by saying this: “To be a true exacerbation, the attack must last at least 24 hours and be separated from the previous attack by at least 30 days. It must also occur in the absence of infection, or other cause. Most exacerbations last from a few days to several weeks or even months.”

But MSers can also experience something called paroxysms, which are sudden recurrences of spasms, seizures, or other MS symptoms. A frequent example is known as Uhthoff Phenomenon (or Uhthoff Sign or Uhthoff Syndrome), which occurs when overheating (especially a rise in the core body temperature) triggers the MSer’s symptoms, usually until that person is able to cool off. (This is why many MSers choose to wear cooling scarves or vests during hot weather.)

Neither an exacerbation nor a parosysmal episode necessarily points to the appearance of new lesions (scarring) in the MSer’s central nervous system.

Sometimes that’s the case, but the conditions of living with multiple sclerosis often mean that existing damage can already cause reoccurring episodes.

People who don’t have multiple sclerosis or who are not well-versed in the nature of this chronic condition may struggle to understand this concept.

My own primary care physician is a prime example of this type of misunderstanding.

Recently, I visited my general doc for a basic routine physical, but I also expressed some (likely MS-related) symptomatic complaints. He ordered a brain MRI. It came back as stable and unchanged.

“Your symptoms aren’t from MS,” he concluded confidently, “because you have no new lesions.” Then he ordered additional non-MS-related testing to address the symptoms.

No MSer will be surprised to find that the additional testing led nowhere. Clearly, MS was causing the symptoms, which I’d experienced many times before during MS flare-ups.

Family members and friends can also be confused by the no-new-lesion concept.

Yes, any MSer rejoices when a scan shows no new lesions. We love finding no additional CNS damage. At the same time, this doesn’t mean we no longer experience relapse-remitting or ongoing symptoms. It doesn’t promise that our proven triggers can't also set these misfires into motion.

Sure, it’s confusing. Try living it.

I’m not a doctor, but I play one in my own very-real life. If you’re an MSer, you probably know the feeling.

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Image/s: Adapted from public domain image/s.