And now I understand why…
When I was diagnosed with MS back in 2005, I had never even heard of Multiple Sclerosis. The moment my doctor said the words, I looked at my husband’s face—and even though he didn’t say much, I could tell this was a big deal. Life was about to change.
Of course, the first thing I did (after being told not to) was go home and spend hours on Google. That night I even told my husband maybe he should take the kids and leave, because I didn’t want to become a burden. (His expression said it all—clearly, that wasn’t happening.)
If you’re newly diagnosed, please remember this: although we may share the same disease name, my MS is not your MS. Every journey is different. Still, after all these years, I understand why doctors don’t tell you everything right away. Here’s what I’ve learned.
1. It Takes Time to Understand
MS is an incredibly individual disease. While many of us share common symptoms—fatigue, numbness, dizziness, weakness, vision issues, pain, bladder problems, cognitive fog, mood changes—the way it shows up is unique to each person.
Doctors also need time to figure out which type of MS you have. There are three main types:
- Relapsing-Remitting (RRMS): the most common initial diagnosis
- Secondary Progressive (SPMS)
- Primary Progressive (PPMS)
Looking at that list of symptoms, I can honestly say I’ve had most of them at one point or another. Some fade, some linger, and others—well, they’ve unpacked their bags and decided to stay awhile.
2. Too Much Information at First Can Overwhelm You
Let’s face it—if they told you everything at diagnosis, you’d probably run screaming. (Or in my case, spend another six hours with Dr. Google.)
Here’s the short version:
MS happens when your immune system attacks the protective sheath (myelin) around your nerves. That damage disrupts the messages between your brain and body, causing a whole range of symptoms.
When I was first diagnosed, I confidently declared, “MS won’t control me!” But the truth is—sometimes it does. And that’s okay.
The Lesser-Known Symptoms They Don’t Warn You About
Here are a few of my “fun” surprises over the years—the things no one mentioned but I wish they had.
The Itch That Never Ends
Oh, the itching! It’s neurological, not physical—no rash, no bug bite, just an itch that feels like it’s burrowed under your skin. I have a scratcher in every room: the bedroom, the living room, the motorhome, the car – I mean everywhere. Heaven help the person who moves one!
The World Spins (and Not in a Good Way)
Vertigo—different from dizziness—makes you feel like the world is constantly spinning. Imagine your worst hangover, multiply by ten, and realize it might never fully stop. I get it most nights when I close my eyes, so I wait until I’m exhausted enough to fall asleep instantly.
Speech That Doesn’t Cooperate
I’ve developed speech issues—what’s called “scanning dysarthria.” Sometimes I slur, stumble, or lose my train of thought mid-sentence. It’s like my mouth can’t keep up with my brain. (My husband says he prefers when I’m quiet—ha, jokes on him!)
Migraines, My Uninvited Companion
Migraines aren’t considered a “hallmark” MS symptom, but they’re frequent visitors in my world. They wipe me out for hours, sometimes days, before I claw my way back to normal.
And that’s all on top of the usual suspects: stabbing nerve pain, fatigue, weakness, spasticity, pins and needles, heavy limbs, balance issues, and brain fog.
Some days I can tackle the world; other days brushing my teeth feels like running a marathon. Each year brings new challenges—and new lessons in patience and grace.
For Those Who Love Someone with MS
If you take anything away from this post, let it be these reminders:
- Even if we look fine, we may not feel fine.
- Everyone’s MS is different—so please don’t compare.
- We shouldn’t have to justify our disease to anyone.
- Invisible symptoms are still real.
- Our energy and ability can change by the hour—understanding means everything.
If you’d like to read more about the emotional side of MS, here’s a link to a related post I wrote back in 2020.
As always, thank you so much for reading and for being part of my journey. 💛
