The Faces of Guillain Barré & CIDP 2018: Day 10- Marie #76

My GBS was a horrifying experience, as I'm sure it was for everyone.  About a week and a half before my diagnosis, I noticed I was more fatigued than normal.  I didn't think anything of it, being that I was working very long hours and wasn't getting enough sleep.  So, I chalked the fatigue up to that.

On Sunday, 17 April 2016, I participated in a half marathon (13.1 miles/21.1 kilometers) in Central Park (I'm from New York, so this is a very local run for me).  It was one of the hardest races I've ever done, both mentally and physically, despite it being my 11th race of that distance.  Two days after that, I began to have trouble with my legs.  They weren't reacting as well as they should have been, and it definitely wasn't normal for how I should be feeling after 13.1 miles.  Less than a week after that, I found myself being admitted to the hospital, completely paralyzed from the waist down.  I was terrified because, here I am, a long distance runner, in very good shape, and I am unable to walk myself to the bathroom.

I spent the first night in the ER, even though I had been admitted.  Countless vials of blood were taken, including one of venous blood which still hurts when I think about it.  All these blood tests, and not a single answer.  The only thing that the blood tests did confirm, was that I had some kind of infection.  I was positively diagnosed with Epstein Barr and Lyme, though, even to this day, the doctors aren't sure if the Lyme was a false positive or not.  Either way, they immediately started me on a round of antibiotics to treat it.

While I was in the ER on Sunday (24 April), the doctor, after a brief exam, said to my mother and me, "I think it's either Lupus, Lyme, or Guillain-Barre Syndrome.  I'm getting a Neuro consult, but one thing is certain...you're not going home tonight."  Shortly after that, he returned with the neurologist on call, who agreed with the chance of Guillain-Barre, and ordered a spinal tap.  That was performed the next day, 25 April.

The morning of 26 April, I was woken up around 7-8 am, by a nurse who came in to give me a Benadryl.  About an hour later, another nurse came in, and hooked my IV up to a bottle of clear, viscous liquid.  She said that I would receive 140 cc's over the next 2 days.  A few hours later, the neurologist who had ordered the spinal tap came in with the diagnosis..."You have Guillain-Barre Syndrome."  That was the first time I cried over my diagnosis.  I was terrified, but also relieved because now we knew what was wrong with me.  Now we can treat it. 

 26 April 2016, the day I was diagnosed

 My first question to the neurologist, while I'm unable to do anything for myself, was "Will I run again?"  He was so confident in his answer, "Of course.  Definitely."  It was as if I'd just asked him if the sky was blue.  He explained that the treatment that had already been started was IV immunoglobulin, or IVIG.  He explained that it consisted of plasma from healthy blood donors, and would act as a reset button for my immune system.  He also said that I would begin physical therapy to relearn how to walk.

I spent almost a month as an inpatient between 2 hospitals following my diagnosis.  The first hospital's primary concentration was the pharmaceutical side of treatment, while the second was for physical therapy.  By the time I was released from the second hospital, I was able to move around well enough using a walker.  I continued very intense physical therapy, including in home treatment, and additional treatment from a family friend, who had worked with my father for many years.  She was one of the first people who called me when I got home, saying that she'd treated 4 people before me with GBS.  Two were back on their feet without walking assistance, one needed a cane, and the fourth went on to become captain of her cheerleading squad, and she would get me back on the roads again.

Five weeks, almost to the day, after I was released from the hospital, 2 of my friends and I signed up for a nearby 4 mile race.  I did not plan on running it, I still didn't trust my legs enough for that.  My goal was to walk the 4 miles in an hour and 20 minutes.  My two friends paced me, knowing that goal.  We finished in just under an hour and 8 minutes.

I lost 6 months of my life when I was diagnosed, and while I was recovering.  Since then, I've been trying to rebuild my life and get back to some resemblance of "normal."  I am now 2 years post-diagnosis.  I still have some residual numbness and tingling in my feet.  I had poor circulation (due to an unrelated issue) long before diagnosis, but it seems to have developed into Reynaud's since being diagnosed.  I still fatigue very easily, which is the most frustrating part for me.  There are days where I still have a hard time accepting that I cannot do everything anymore.  But I have returned to running, and other forms of exercise.  The brain fog is also extremely frustrating, and that, unfortunately, does not show any signs of improving.

my wedding this past December, to the man who stuck by my side through everything, and proposed 6 months after my diagnosis.

The doctors still aren't 100% sure what triggered my GBS.  Around the time I was feeling fatigued, I also felt a little under the weather, but I thought it was allergies, considering the time of year.  What they feel it was, is actually the Epstein Barr virus, that may have triggered it.

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You can follow Marie on Instagram under @runningwithgbs