“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:
- Can't I just blame it all on MS?
- 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.
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