2020--The year of surprises

Recently I have found myself using 2020 as an excuse for the unexplainable...Why did this happen?  Who knows, its 2020!

So it only seems fitting that smack dab in the middle of 2020 I should find myself with a super rare autoimmune disorder that took 2+ months to diagnosis!

Lets start a few months back.  On August 21st, I turned 37 and my body basically decided it was done for.  No, not really but that is the date closes to when I can remember these feelings start.  So around my birthday I started to experience some numbness and tingling in my feet and hands.  Not a huge deal, I was right in the middle of sleepless nights, the stress of motherhood, working insane hours trying to gear up for a big work transition, oh and a worldwide pandemic.  I chalked it all up to stress and swore I would nap and relax on our upcoming vacation.  Well about a week later, we left for the beach and by the time we arrived, I was stiff and could barely get up the stairs.  I gave myself a few days, some naps, and time off work but by day 4, I decided to see an urgent care doctor just to see what was going on. He ran a bunch of labs (lymes, covid, b-12, iron, diabetes, etc), suggested some vitamins, more rest, and said he would be in touch.  Slowly the lab work came back in...everything was fine with all my bloodwork, but still I felt worse.  He said this was now out of his scope and told me to follow up with my primary care doctor.  So about a week later when we were back in Richmond, I went to see my PCP and she ran a few more labs and referred me to a neurologist for a consult.

About 5 days later I was meeting the neurologist for the first time with more clear labs from my doctor. And thus started the intense round of tests, first up more labs, much more specific ones, an EMG (nerve conductive test) aka a super painful test where the tech administers increasing stock waves through your nerves to try to get a response, followed by a doctor coming in to stick a needle in various muscles to check their reaction.  This test showed significant damage to both my myelin sheath and the nerve axons (aka not good), however my muscle tone was strong and good.  Next up was an MRI of my lumbar and my spine.  45+ minutes in that MRI cave was a lot, I never considered myself to be claustrophobic but that pushed the limits.  At my follow up appointment, I found out that the MRI did not show anything out of the ordinary.  Onto the next round of labs and my next exam which was a spinal tap.  I figured this would be relatively easy since I have had two c-sections, but the procedure was much longer and the doctors first puncture hit bone--ouch!  So after 45 minutes to fill 4 vials of spinal fluid, I was able to relax a bit. While in recovery, the hospital took more labs which they lost so I had to go back to LabCorp for my 5th round of blood work (and oh so many broken blood vessels from missed veins--see pictures).  The days following gave me a sore spot on my back, but more waiting to find out that my spinal puncture showed elevated protein levels.  My doctor also ran a Chest CT and more blood work just to rule out one last thing.  By this time, it had been about 6 weeks since I first saw the neurologist and about 9 weeks since I started having symptoms.  A few days later, I got the results of my spinal tap, normal range for spinal fluid protein is anywhere from 15-45mg/dl.  Mine was at 200mg/dl.  That plus the EMG results finally narrowed down my diagnosis to Guillain-Barre Syndrome.  A rare auto-immune disorder effecting about 20,000 people in the U.S. each year.  

Finally a diagnosis meant treatment so that brings me to two weeks ago, over 10 weeks after my first symptoms, I started on the road to recovery.  I had to go through 5 days of IV-IG therapy to help my body reset and stop attacking itself.  GBS is a syndrome that generally presents (60% of the time) after a virus or stomach bug, and the body goes into attack mode going after the virus but it gets confused and begins attacking itself and the nerves in your body.  In my case, I cannot trace it back to anything specific, but so far the IV-IG seems to be helping.  I went from being unable to sit on the floor with my kids to being able to do that.  I was unable to get up from a chair without the use of my arms, to getting better at that.  So the therapy plus twice weekly physical therapy seems to be helping.  Even still my neurologist told me that it could be up to a year before I am 100% back to my old self.  

So in the midst of everything else going on--a global pandemic, many many doctors appointments and various tests, my boss retiring and me starting a new job including transitioning all our clients over to a new advisory firm, having a newborn and with that a lack of sleep and breastfeeding, I had to squeeze in time for the IV-IG treatment, which was for about 5 hours for 5 days in a row.  Here I am in my room getting my infusion:

The downfalls of the treatment was being extra tired and worn down, and I also experienced very intense lower back pain--so rough one morning that Marc had to help me get out of bed even.  (Let me take this opportunity to brag on my husband for a minute--there is NO WAY I could have survived this by myself--he had to help me tie my shoes, help me with the kids, took on all the household chores, worked a full time job, and had to be patient with an ailing wife).  I am now two weeks removed from the treatment, my bruised arm is healing, my energy is returning and I am able to do a little more every few days.  

Currently, stairs and bending over still present the most problems.   But I am optimistic these too will get better over time, just another thing to add to the craziness of 2020!  (Sorry to friends and family that may be reading about this for this first time on our blog, as you can imagine, life has been intense these last few months and with Covid we aren't seeing as many people, so this seemed to best way to tell my story).