Story about Guillain-Barre Syndrome .

Diagnosed with GBS while pregnant

Dec 29, 2015


I was diagnosed week 24  (April 2015) of my pregnancy. Symptoms started as early as week 14 (Feb) and it started with weakness in my right leg & core ab.  I was lucky as it was slow moving. I have severe nerve damage in my legs/feet and the myelin sheath was damaged in my arms/hands.  We originally thought it was the baby sitting weird as pregnancy does strange things to your body.  I kept getting weaker and weaker, thank goodness I went to the neurologist who diagnosed me immediately and admitted me right on the spot. I had a 5 day drip of IVIG.  It's rare to have GBS let alone GBS while pregnant.  I left the hospital with a walker, not being able to really feel my feet and horribe balance.  The constant tingling and numbness in my hands and feet drove me absolutely crazy. My grip strength in my hands was 12 & 17lbs (avg person my age should be at 60-70lbs). I also then broke my toes in my "good foot/leg" at week 30 of gestation. I scoured the internet to find cases/studies of anyone who had been pregnant with GBS. My neurologist said he had read all of the cases he could find (about 5) and said he thought I would most likely recover 80-100% back to normal.  Working thru a delivery plan with the OB/GYN and the anesthesiologist team was good but very scary.  As the anesthesiologist team had read all the cases and saw there was a chance the GBS could flair up from epideral. I was terrified about giving birth and having the GBS escalate again and maybe cause me to be paralyzed or intubated.  Thankfully that did not happen. I had my baby at Week 39.  I was put into a GREAT nationally recognized rehabilitation center as inpatient as I had to learn to walk without locking my knees (picked up bad habits from having to wear a boot due to broken toes) and to get OT/PT help on tips on how to take care of my baby, as I did not have the strength to snap a onsie let alone hold her for a long period of time.  I was there for 5 days and now still go to PT as outpatient.

I'm on the road to recovery and slowly but surely am regaining strength in my hands/arms & legs/feet.  I worry about having a drop foot in my right leg.  My baby has special needs and so I've had to work really hard on recovery to take care of her.  Overall, I'm thankful for my husband, mom, family & friends.  Once I was diagnosed I realized how blessed I was to have a "village" to help me and my daughter.  They all chipped in to help. 

The other battle through all this was having to worry about my job.  GBS & maternity leave did not line up together so FMLA did not really protect me, that's been a HUGE learning of how to maneuver around all of that, on top of paying bills while I'm so fatigued.  

If anyone is pregnant/was pregnant with GBS and would like to correspond, please do private message me as I'd love to be utilized as a resource or to compare/contrast our learnings. 

 

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


Is Guillain-Barre Syndrome hereditary?

Is Guillain-Barre Syndrome hereditary?

Celebrities with Guillain-Barre Syndrome

Celebrities with Guillain-Barre Syndrome

Do I have Guillain-Barre Syndrome?

How do I know if I have Guillain-Barre Syndrome?

Guillain-Barre Syndrome diagnosis

How is Guillain-Barre Syndrome diagnosed?

Latest progress of Guillain-Barre Syndrome

What are the latest advances in Guillain-Barre Syndrome?

Guillain-Barre Syndrome causes

Which are the causes of Guillain-Barre Syndrome?

Guillain-Barre Syndrome sports

Is it advisable to do exercise when affected by Guillain-Barre Syndrom...

Guillain-Barre Syndrome symptoms

Which are the symptoms of Guillain-Barre Syndrome?