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)

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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