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)

Sunday

Flu shot won't awaken MS? Beg to differ.

 

Does the flu shot aggravate multiple sclerosis? This question seems to come up perennially.

 Plenty of MS experts (like the folks at the Cleveland Clinic) contend that a flu shot is unlikely to exacerbate MS. And that was my experience for several years. I had annual shots to prevent influenza, and I experienced no measurable side effects. OK, sometimes I had some mild soreness in the arm receiving the shot. But that was it.

 


Until this year.

 Curiously, I had very little reaction to the COVID-19 shots (#1 and #2), except for some fairly significant fatigue and overall achiness after the second round. And I had those vaccines about six months ago.

 

But the flu shot was another story this time.

 Sure, the influenza shot is different each year, as scientists try to target those flu variants that seem likely to be the most problematic at the time. But generally, we might expect the actual science to be similar.

 

Go figure.

 Almost exactly one month ago, I had this year’s flu shot. It seemed pretty routine.

 One day later, MS vertigo (one of my weaker links) rose up with a vengeance. I also experienced extra tingling in my hands and feet. My vision blurred in one eye (which happened to be the one where optic neuritis had led to my MS diagnosis in the first place).

 Within a couple weeks, the symptoms lessened a bit, but they are still with me. The vertigo comes and goes in waves and seems to be the last complaint to quit.

 

MS gets worse when we’re sick.

 Ask any MSer. When our immune systems go into overdrive, our MS symptoms tend to come alive. And what does a vaccine do? It alerts our bodies to gear up to fight illness. The problem is, if we have MS, our bodies begin fighting themselves. It’s complex, but also quite simple.

 So when I hear medical experts calling out that flu shots won’t affect MSers, I beg to differ. I’ll have to think twice about having one next year.

 Anyone else have a similar experience?

 

Related items:

 

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

 

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Friday

Simple OTC product helps vertigo?

File this one under “NOW they tell me.”

 Here we go again, I groaned, as vertigo sent me a-whirl. It started in waves of dizziness, unsteadiness, and nausea – as it generally does. But it built into a non-stop tsunami of nastiness that sent me to bed for three straight days.

 



The slightest movement or turn of head made it worse.

 By the end of day number two, I called my physician’s office. No answer. No callback.

 Tethered to bed by the raging MonSter’s thrill ride from hell, I logged my symptoms (along with what I ate, how much water I drank, and when I took my migraine medication or ibuprofen or anything else).

 On day number three, I dragged myself to my computer and accessed my patient portal. I emailed my symptom log from my smartphone to my PC and copied-and-pasted it in a message to the doctor’s office. Then I slogged my way back to bed.

 Minutes later, the nurse called with an appointment. I was to appear in the clinic two hours later.

 

Amazing how that happens when the message gets through, right?

 I arranged a ride (as I was in no condition to drive, feeling carsick merely being still).

 In the office, the doctor reviewed my symptom log, checked my vitals, and wrote me a prescription for …

 

Wait for it …

 The script said “Meclizine.”

 What’s that?

 Meclizine is an antihistamine. It’s generally used for nausea, dizziness, and vomiting from motion sickness. And it’s available over the counter. Brand names include Bonine and Dramamine Less Drowsy Formula.

 As a child, I frequently experienced motion sickness on longer car rides, especially on curvy, bumpy roads or in stop-and-go traffic. So I am very familiar with Dramamine.

 

But duh.

 It never occurred to me that Dramamine might help with MS vertigo. And no doctor or MS specialist ever mentioned that to me.

 I want those three days of miserable head-whirling bed-rest back - along with all other times I was sidelined with the whirling nightmare of vertigo.

 And now I keep motion sickness medication in my nightstand, my car, my purse, and my gym bag. I even have the chewable tablets in my running pack. Just in case.

 I’m also looking into the anti-nausea bracelets that lots of cruise ship passengers and air travelers wear to find out if those might help with MS vertigo as well. (There may be a product review here in the future.)

 

NOTE: I am not a doctor. I do not have advanced medical training, licensing, or certification in medical or pharmacy sciences. I just know what works for me. Please confer with your own medical team before taking any medications, therapies, or treatment regimens.

 

By the way, the doctor tried performing the Epley Maneuver for benign paroxysmal positional vertigo (BPPV), in case my symptoms happened to be caused by shifting calcium crystals in the inner ear. That made the whole experience worse. MS is unlike any other animal, and this simply proved that again.

 

Related items:

 

Image/s: Adapted from public domain image.

 

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.

Saturday

Remember hot showers? Not with MS.

  Hot showers are the stuff of nightmares for those us battling multiple sclerosis. The MS MonSter makes steamy, soothing, scorching-hot showers altogether impossible.

 

Got sore muscles? Spasticity? A hot shower or bath might be just the ticket for most folks suffering from all sort of aches and pains and muscle cramps. But not for the MSer.

 Maybe it’s worse in the summertime. Temperatures soar outdoors, while homes, workplaces, stores, and other indoor spots are chilled.  The extremes can make us reel, especially when we step into a steaming shower or bathtub.

 

If you live with MS, have you experienced any of these scenarios?

  •  Does your vision blur in the shower, even more than the mirror or shower doors do?
  •  Did you ever had to step out of the shower (maybe still soapy), just to recapture your own bearings?
  •  Have you grabbed the handrail mid-shower, because you lost your balance?
  •  Did you ever climb out of the tub and have to lie down in total exhaustion for a few minutes before drying off and dressing?
  •  Have you forsworn hot baths, knowing they’ll do more harm than good?

 I can raise my hand for all of these questions, as long as I haven’t just climbed out of the shower. Then I might need a moment to recover first.

 Of course, a cold shower would be bad for spasticity, which plagues most MSers anyway. So it’s all about finding a happy medium between fainting and freezing.

And don’t get me started on saunas or hot tubs.

 

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 Image/s: Adapted from vintage movie still. Pub. Dom.

 

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.

Friday

Got MS? Should you get the COVID-19 vaccine?

 Multiple sclerosis warriors are wrestling with this sticky question, as pharmaceutical giants feverishly roll out their own versions of coronavirus vaccines. For many, this is an answer to prayer. But for MSers, the whole COVID-19 issue may be stealing our sleep.

 

The answer is that there is no easy answer.

I’m not playing click-bait or bait-and-switch here. It’s the reality.

 

MS is different for everyone who has it. And that colors the answer about the vaccine.

Each of us needs to make his or her own inquiries about the vaccine.

At this moment, it seems specific testing has not been done with MS patients and COVID-19 vaccinations. That makes our decision more difficult. It does appear a group of MS experts are examining the possibilities, so we may learn more about this eventually.

Here are the questions I have asked, in my personal search for answers about the accepting a coronavirus vaccine. Frustratingly, there are at least two sides to every answer.

 


What kind of MS do I have?

Life is very different for those with the more progressive forms of MS than it is for those of use currently living with relapse-remitting MS (RRMS). So is the COVID-19 threat.

 

Based on my type of MS, how should I proceed?

Those with progressive types of MS may be categorized as high-risk and boosted ahead in the line to receive COVID-19 vaccinations. The coronavirus can be extra dangerous for those already immunocompromised and physically challenged in various ways by MS. On the other hand, their personal medical conditions (and MS medications) may increase their risk of MS complications arising in response to the vaccine.

Those of us with RRMS tend to have stretches of time (of unpredictable duration) where some or most of our symptoms seem to abate. Of course, the last thing we want to do is awaken the sleeping giant. COVID-19 can do exactly that. Can the vaccine to that too?

 

Am I taking medications that may compromise my immune system?

Many of the disease-modifying therapies commonly prescribed for MS are aimed directly at the immune system. That may forestall some MS flare-ups, but it can also leave a person extra vulnerable to infection. And that includes the coronavirus. For that reason, a physician might direct an MS patient to have the COVID-19 vaccine.

At the same time, lots of experts recommend MSers refrain from this vaccine (and perhaps also flu shots) because those shots are intended to cause the body to produce antibodies. That means rousing the immune system.

The issue is really a double-barreled shotgun for anyone with MS.

 

Which would be worse, catching COVID-19 or reacting to the vaccine?

It’s a crap shoot for sure. The simplest response sounds like a pat answer, but it rings true:

Check with your own MS doctor.

Sorry, that’s the best we can do.

 

Which COVID-19 vaccine will I be offered?

It’s too early to tell, at least around here. Currently, two coronavirus vaccines are in play, with more potentially entering the arena soon. Each may come with its own set of potential side effects and risks. We may or may not have the opportunity to pick which shot we receive, as shipments seem to target various organizations and facilities.

We kind of have to watch and wait … and pay attention.

 

As for me, I am generally leaning towards receiving the COVID-19 vaccine.

I took a flu shot for the first time in a decade last fall. And I had minimal adverse reactions. I did feel a little funky for a couple days, but I have (so far) avoided the flu. My hopes are high that I will respond similarly to the COVID-19 vaccine.

 

My opinion about the COVID-19 vaccine may change before I am eligible for it.

We are likely to learn a lot more in the coming months, so I’ll be reevaluating my position on an ongoing basis. My personal characteristics place me pretty far down the list in vaccine priority.

I refuse to pass judgment on anyone who does or does not choose to have the coronavirus vaccine, although I do look forward to the day when the pandemic lifts.

 

On the up-side, we MSers are pretty good about enduring injections.

We definitely take this in stride. I cannot tell you how many people I have heard complaining about having to get a COVID-19 vaccine, simply because they dread shots.

Heck, we could do it ourselves!

 

Related items:

 

Image/s: Adapted from public domain image.

 

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.