i am entering Day 10 of this “Attack on the Left Leg” (ALL, haha).
i haven’t written since i was medically discharged almost a week ago. to be honest, i wished i didn’t say yes to discharge. i thought the ALL was much better, even though i still needed the crutch.
the first time it happened in March, the ALL was brushed off as a spinal issue. it took me 4 days hobbling around with my crutch, then ditching it and risking it for the next 3-7 days. only then did the ALL disappear completely,
to recap, the ALL has me waking up from sleep like my left leg has fallen into a coma. after some moving and scrambling about to get to Emergency, it got a bit clearer what the symptoms were and where it was affecting. it was mostly numbness, weakness, and parasthesia(pins and needles). the first attack, it went no higher than my left knee. this time, it went up half my thigh.
when i was admitted for my 2nd ALL, i was admitted under neurology. very quickly MRI brain and cervical spine was done. then later MRI lumbar spine was done. they decided to do an electromyogram, a nerve conduction study, and a somatosensory evoked potential, all on my leg. the most dreaded word i kept hearing in the 4 days in hospital- “it’s normal”.
i was frustrated. something was wrong yet no tests were showing anything. without a diagnosis i cannot be treated. i felt like i was reliving a 17 year nightmare going undiagnosed with JIA. i just wanted the symptoms to go away. i want a name to it.
going home on Day 4, i was pretty sure i couldn’t ditch my walking aids anytime soon. by Day 7 i had fallen twice at home because i refused to use my cane at home.
on the night of Day 8, i was almost in tears. the symptoms weren’t going away. the sole of my foot was still numb. my thigh was numb and it was worsening. i felt it was stupid to go back to the Emergency. but i asked plenty of my friends, and they supported my decision. i was doubtful and afraid that i would be rejected and sent home if I did go on Day 9.
i went, and i asked if i could be seen by rheumatology instead of neurology, since the latter can’t find anything. they agreed. took bloods, reminded them to take inflammatory markers but also said my haemoglobin of 8.8 would skew my ESR. they took it anyway. when i was being clerked by the general medicine resident, he went tendon-tapping again (their favourite test lah). when he checked my left ankle, and tapped my Achilles’ tendon, there was no reflex. he looked so puzzled. tried many times to no avail. i had to tell him and reassure him it had happened in the first 4 days too.
i was discharged after my doctor made sure my ankle reflex was back. it was back indeed! so why it is gone again remains a mystery.
my inflammatory markers are also elevated. i wouldn’t care really, if i was sick and the numbers are high. but apparently i am very well, RA in remission. how could my ESR be 84 and CRP 31? i have naggy feeling about this, and the offhand suggestion on my prior discharge to have steroids.
i am tired. i hate fighting something i don’t know about, and neither do anybody else. some of the doctors say it may take months to go away, but i won’t settle. make it go away. find out what’s wrong, give me a diagnosis, treat it.
oh and when my records say that my RA is controlled and in remission, you don’t get to say it to my fac when i can’t do certain manoeuvres. i only agreed upon the quiescence of my RA because there was no point fighting the chronic rotator cuff tendinitis anymore after trying so hard. so yes it’s in control, but my pain score is 3. you don’t get to doubt that.
i told my best friend that i suspect it is peripheral neuropathy. if not it is neuritis, which i am not entirely convinced by. maybe it should be treated by the rheumatologists. maybe plain pred would do the trick. anyhow, this inpatient stays have been flaring up my joints. managed to get the pain team to titrate my doses.
Day 10, and it’s no better. waiting for the neurologist rounds later in the morning. i hope i don’t become murderous because of nonsense muttered.