being my own best advocate
unraveling my medical mystery
on the afternoon of october second, 2025, my backside suddenly went numb.
the next day both of my feet were numb as well.
and over the next three months, these neurological issues only worsened and progressed until my entire lower body was completely numb, from midriff to toes.
two months into it, i was FED UP. with the poking and the prodding and all things medical. after three doctor appointments, three different blood tests, five physical therapy sessions, a lumbar spine x-ray, a lumbar spine MRI, and a referral to a spine center (which by the way never responded), i still had no definitive answers as to WHY my lower half was numb. i was seriously struggling but nowhere closer to understanding what in the world was going on. one thing i did know - the tests (and i) did not agree with my doctor’s diagnosis (that it was my back causing the numbness).
i also knew that i needed to take care of myself the best i could and start looking for my own answers. i knew i’d have to take matters into my own hands and do my own detective work, no matter how scary the findings might seem.
after several wrong turns (and frightening moments), i finally figured it out at the end of november. i discovered what was causing the numbness, plus a host of other symptoms i’d been experiencing since the spring of 2025 (that were all part of the same puzzle). in fact, i now truly believe my body kept creating additional symptoms as it TRIED DESPERATELY to supply the final clues!
and it’s a fascinating twist-and-turn story. i’ll start at the beginning . . .
i have a chronic inflammatory condition called samter’s triad for which i receive a monthly biologic injection of nucala. one of the side effects of nucala is shingles. during the six months prior to the numbness, i could feel shingles kind of “brewing” around my midsection, but with no pain and no rash. i recognized the nerve reaction though, because i’d had shingles several years before.
i belong to a samter’s triad group on facebook and out of the blue someone posted this question: “i’m curious . . . who here had mononucleosis as a child or teen?” the responses were overwhelmingly “yes” and that included me too. i’d had a very severe case of mono when i was 18 years old, during my first semester of college. i had to leave the university and go home to convalesce for over a month.
mononucleosis is caused by the epstein-barr virus, which approximately 90% of the world population carries. a lot of cases are asymptomatic. someone else in the group posted a study of people with chronic sinusitis who had had mono going on to develop polyps. that’s me. the “triad” in samter’s triad is characterized by the combination of polyps, asthma, and an allergy to aspirin + nonsteroidal anti-inflammatory drugs (NSAIDs).
so i immediately started researching epstein-barr virus. i found that it remains in your system forever and that the three primary ways it can be reactivated are: 1) stress (plenty of that during the year, with my father-in-law’s death and a host of other factors); 2) hormonal changes (my estrogen level took its final dive in 2025, approaching zero); and 3) the shingles virus (which i thought had been brewing for several months, possibly activated by my nucala injection). wow . . . a triple whammy for me!
and when i started researching the symptoms, i was convinced >> the pattern of the numbness in my legs, the rash that appeared on my torso (which also showed up earlier on my face - following a certain pattern as well), the persistent cough i’d had, the peripheral neuropathy in my feet that i’d experienced for months before they went totally numb, etc etc etc.
my doctor in italy had prescribed the anti-viral acyclovir during my shingles outbreak six years ago. after reading that it could also be prescribed for reactivated epstein-barr virus, i knew i had to try it.
just one problem. i’d never been satisfied with the direction my primary care provider had sent me in after the specific symptoms i’d presented to him. not only that, but he more than once questioned the fact i was doing my own research. so i was hesitant to go back to him with this new information. i’d recently had my annual pap smear, however, and my gynecologist is not only an excellent physician - he sincerely listens to his patients. so i went to him with my strange medical tale, and he was kind enough to prescribe what i needed. it was two days before christmas, and one of the very best gifts that i received. i remain grateful to him for genuinely hearing me and being willing to treat me.
after only three days the all-over aching in my legs had almost completely subsided. after the full dosage, the numbness was reduced to only two small areas. and then just a little while later - three months and three weeks after the onset of the hypoesthesia - i was FINALLY symptom-free. HOORAY!
[i couldn’t revel in the victory for long though - only a few days later i broke my arm! but i'm healing nicely now and putting that little setback behind me as well. my last physical therapy appointment was monday. on to continued good health.]
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so . . . a kaleidoscope of upset. but what is the moral of this long convoluted story?
to LISTEN to that inner voice of yours. it ALWAYS knows.
because you know your body best. it makes sense to pay attention to the signals and cues it’s giving you, since you’re the only one who knows precisely how you’re feeling.
you know your mind and heart best too. you know what you like and what you want, and it’s usually (dare i say always?) wise to follow the path your intuition is leading you in.
p.s. i think it’s absolutely okay - in fact, imperative - that you do your own research when it comes to health matters. after all, you care most about what happens to you. if your doctor suggests otherwise, it might be time to look for a new one. being able to discuss the information you’ve gathered with your medical practitioner in order to move forward with appropriate treatment is ideal.