quite a day...so i went to the neurologist today (he's about an hour drive from my house) to follow up on this scary re-occurance of the numbness... i figured he'd say well, we just don't know, we just have to wait and see, we can't do anything in first trimester anyhow, maybe it's from the weird hormonal fluctuations of pregnancy, etc etc, and then i'd proceed into boston to have lunch with an old friend...
instead he said:
"this is definitely a flare-up due to inflammation, not just a now-and-then-symptoms-can-re-occur situation."
" you have 'relapsing myelitis,' and if there's no other cause identified, which there hasn't been, we should get ready to start MS treatment once you deliver."
"you should talk to your midwife about if we can use steroids at this stage of pregnancy."
"if you weren't pregnant, i'd be starting you right away on IV steroids and interferon (which is MS treatment.)"
he noticed i had redness on my neck. and he said,
"one of the few things that can cause myelitis is herpes zoster [which is from the chicken pox virus, and is otherwise known as shingles], and in rare cases you can get it without the painful blisters, it's called zoster sine herpete."
"we can test for this with a spinal tap."
" i can get you in for this today."
so, if it IS from zoster, it's VERY treatable, and as i came to find out later from my midwife, the treatment (valtrex) is considered safe in pregnancy and in fact they give it to women in the last month of pregnancy who have herpes....
so i get a last minute spinal tap. so much for the lunch date.
heroic partner jumps on her bike and on a train and into a taxi to come pick me up afterwards and drive me home, which was really excellent because i was totally achy afterwards and driving from boston to providence in rush hour traffic is no joke, i don't know how i could have done it.
it takes a week to get the results back, but both the neurologist and my midwife are recommending that i start the valtrex right away. i am going to wait till tomorrow to have one more check in with the midwife about it because i am of course nervous about taking ANYTHING so early in my pregnancy.
but... i am cautiously optimistic that this may be a definitive, TREATABLE cause. i'm cautious because even for this rare form of zoster, i'd still be atypical as i am numb on both sides, not just one side, weird stuff like that.
what a year it has been so far:
1/1, 7 am: peed on a stick and it's positive
1/2: peed on a stick again and it's positive again
fri 1/4: the almost-born child of our donor and his girlfriend, who was due to deliver by planned c-section on 1/7, is stillborn. it's terrible, absolutely awful.
1/7: i go to midwife and find out that i'm not automatically high risk just because i'm 40 and had this weird myelitis thing, and start dreaming of delivering in the alternative birthing suite for low risk pregnancies.
1/8: wake up in the middle of the night with a bad cold that's still hanging around, have to cancel day trip to NYC where i was going to pick up baby stuff from our donor and give him a hug and see how he's doing.
1/9 or so: wake up in the morning and my right hand is numb
1/16: go to neurologist, by now a lot of my body is mildly numb, and find out i might have MS or have this other thing they should have tested me for a year ago but didn't, and get last minute scary spinal tap.
and i'm supposed to not be stressed out??!!???!?!?!?!
on the way home, just for variety, i started freaking out on the way home because i feel like i haven't had any unreasonable mood swings or crying jags or nausea in the past few days and am worrying that maybe the fetus isn't developing....
ok that's the report for now.