The perfect storm can bring on an MS maelstrom

 I should have seen it coming. A full constellation of circumstances set me smack in the middle of the perfect storm, which invited a full-blown multiple sclerosis exacerbation.

 

If you live with MS (or love someone who does), you know where this is headed.

• It all started with a fuller-than-usual calendar, which drew me to overextend myself. (OK, I know that was a choice, but it still happened.)
• Seasonal allergies kicked up a few notches the same week.
• Then I came home from a jaunt in the woods, carrying a tick. The nasty little guy embedded himself in my lower back, and I didn’t discover him for 24 hours. (He may or may not have been a Lyme tick. And we all know how doctors like to confuse Lyme and MS.)
• Just in case, the ER doc gave me a tetanus shot. (Ever have a reaction to an immunization?)
  
• Right around that time, I began topical chemotherapy treatment on a couple of sites, following the instructions of my dermatologist.
• Enter flu season.

 

Wham. Bam. Slam. There’s the MS maelstrom.

 The dictionary defines “maelstrom” as a massive and powerful whirlpool, a tumultuous set of circumstances, pandemonium, or bedlam.

 

Kind of like an MS flare-up.

 The whirlpool part hits all too close to home for MSers like me, who battle vertigo frequently, especially when MS rises into full force.

 I was down for the count (flat on my back) for nearly two weeks. Violent vertigo, daily migraines, total fatigue, blurry vision, and nearly complete loss of appetite pounded me. Sinus pressure and drainage that ended up in my lungs, sending me into full-body coughing fits didn’t help.

 Two months later, I’m still staving off vertigo (as much as possible) with motion sickness medication and finishing the vestiges of a lingering cough.

 Looking at the list of possible MS exacerbation triggers, I cannot exactly tell which ones whipped the MonSter into such a frenzy.

 But it’s easy to tell that I was right in the middle of the perfect storm.

 

 

Maybe you’ve been there.

 Sometimes we can spot and avoid our most predictable MS triggers. But this crazy condition has a mind of its own. Sort of like Mother Nature’s fury, when she stirs things up into a superstorm.

 I’m thankful that this tempest seems to have tamed, at least for now.

 

Related items:

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• MS episode: Is it a relapse, a new lesion, or what?
• MS is like the cancellation disease

 Image/s: public domain photp

 

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MS and vision: How many types of glasses do I need?

 

Vision is an issue for almost everyone battling multiple sclerosis, or so it seems. Most of us have experienced optic neuritis in one or both eyes, when MS attacks the optic nerve, wreaking havoc on eyesight. We face tunnel vision, color blindness, eye pain, loss of depth perception, and general blurriness until it subsides. If we’re lucky, most of the damage is temporary – at least, until the next episode.

 Vertigo is another common complaint among those with MS. Reeling, unsteadiness, and dizziness can crop up anytime. And they do.

 

That makes vision care considerably more complex for MSers.

 Personally, I’ve been through the wringer, when it comes to finding useful and appropriate eyewear.

 Initially, all I needed was a pair of basic magnifying readers. I’d pick these up for reading, computer work, crafting, and other close-up activities. It was enough to keep a few pairs in strategic spots around the house, office, car, and other locations for quick grabbing.

 Eventually, I grew tired of the constant off-and-ons. And, like many, I began needing some vision help with distance sight as well. So I tried bifocals.

 Ugh!

 I would imagine it’s tricky enough to nod one’s head constantly up and down, finding the sweet spots on bifocals for far and close sights. But with MS attacking spots up and down one’s spine, all that neck movement can be a real headache. (See what I did there?)

 And the shifting back and forth from near and far tends to be jarring. It sure was for me. So I tossed the bifocals.

 Then my eye doctor suggested progressive lenses.

 Oh, boy.

 Progressive lenses somehow blend the distance prescription down to the close-up prescription without visible dividing lines. They’re particularly pricey, but plenty of people crow about how wonderful they are. (Actually, I have never heard an MSer praise them, now that I think about it.)

 Ah, hindsight!

 OK, so the vision center expert minimized the possible struggles I might encounter, simply defining a “short-term learning process” with progressive lenses.

 That didn’t even come close to describing the blurriness, double vision, and vertigo I experienced when I began wearing a very pricey pair of progressive lens eyeglasses. Yes, I even barfed.

 Then I did a little reading on the issue. Apparently, progressive lenses can bring blurry vision, headaches, nausea, balance problems, and an impression of still objects bouncing around. Some people even trip or fall when wearing them. Sounds a little dizzying and disorienting, right? Just the ticket for someone with MS?

 I reverted to my trusty pairs of cheap readers. At the time, I still didn’t need much help for distance viewing. I figured I could live with a little squinting, rather than reeling from the weird lenses.

 

Ah, but things change in time, don’t they?

 My latest eye exam revealed I need more distance vision help. When I protested about bifocals and progressives, my eye doc recommended I try using one pair of glasses for distance and another for close-up.  And because most of my need for distance viewing is while driving, I also picked out a pair of prescription sunglasses.

 Gee, this will be fun, trying to keep track of all that eyewear.

 Life with MS. No one ever said it would be simple.

 

Related items:

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• MS style: Sporting shades in the shade ... or fog or rain
• MS symptoms fire when we’re sick
• Optic Nerve Issues - Facing MS symptoms from A to Z
• Optic Neuritis: A Look at Sudden Blindness
• Side-to-side eye movement may help memory, but it makes me wanna hurl

  Image/s: public domain photp

 

 

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You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.

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.)

 

Related items:

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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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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.

 

Related items:

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• Feet? Feet? Where are my feet?
• MS has made me more body-conscious.
• MS symptoms fire when we’re sick.
• With MS, a hot flash may not be a hot flash at all.

 

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

 

 

Feel free to follow on 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.

Pain & fitness: Sometimes the answer is the last thing we wanna do

 

Feels like sciatica, I sighed. Actually, I may have used less scientific and more graphic terminology. And it may have been the all-too familiar nerve pain that can come with having multiple sclerosis.

 

But let’s not split hairs here.

 My lower back was giving me agony. Bending, stretching, twisting, and even standing still hurt. Sitting and reclining were the worst.

 I moaned and groaned (mostly to myself, but more than once to a couple of others) for two days. I spent two whole nights, squirming and wincing and trying to find a sleep-able position. Didn’t happen.

 Ask any MSer what happens when we get overtired. It’s not pretty. And I was there.

 

Something had to change.

 Finally, on the third day, I dragged myself out of bed, hobbling like a fairy tale monster. I forced my feet into my sneakers and made my way to the gym for a stretch/cardio/strength class. Honestly, I expected to limp out of the session early.

 

But it actually helped.

 Moving was the last thing I felt like doing. The mere idea of stretching made me want to cry.

 As it turns out, all that activity was just what I needed. Isn’t that often the case?

 

This can take all sorts of forms.

 Maybe it’s physical therapy. It might be walking up and down the driveway once or twice. It could even be taking a shower, when symptoms are making the MS life extra tough. The thing that could help the most still draws our dread.

 When we make that move, we may be surprised to find some relief.

 

Let’s not get carried away here, though.

 It’s easy to overdo things, while battling MS. When we are able to get up and get going, we may be tempted to go all-out, making up for lost time (when we were sidelined). That’s a danger zone. We know it. But we still fall into that trap.

 I’m not throwing shade at anyone who is immobilized today, with the MS MonSter attacking in full force. The battle looks different for each of us.

 It’s just that sometimes I need the extra internal shove to work out some relief. Anyone else know the feeling?

 Let’s hope I don’t regret today’s workout tomorrow (or even tonight).

 

Related items:

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·        Despite MS, sometimes we just have to take it to the limit

·        MS makes me clumsy sometimes.

• MS makes me wanna cheer anyone struggling to exercise
• Who wants to exercise when your head is pounding?

 

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

 

 

Feel free to follow on 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.