The Faces of Guillain Barre 2017: Day 7- Juilianna

Sunday, May 7, 2017 0 Comments

My name is Julianna. I am 14 years old and I was diagnosed with Guillain Barre syndrome on December 4th, 2014. I was 11 years old.
It all started around thanksgiving when I felt tingling around my feet and ankles. My parents thought I was just exhausted from shopping. After 3 days I still felt tingling and a little numbness. I went to the ER where they told my i just pulled a nerve in my back or whatever and I was sent home. 6 days later I woke up and my leg (foot to knee) felt heavy and numb. I went to my family doctor who referred me to a neurologist who diagnosed with with Guillain Barré.

December 4th was the most painful day of my life. Physically and emotionally. The doctor ordered and EMG and a MRI. All I remember was rude nurse who just shocked and poked and me without talking to me and I was crying. I remember how big the needle looked but not being able to feel it.  I had to go to another hospital for the MRI. I remember lying in pain for 30 minutes straight. I felt like I couldn't feel my thigh and my lower back.  We got a call the day after saying I was diagnosed with Guillain Barré Syndrome.

I went through 13 IVIG treatments at home. Part of that was a 5 day treatment and 1 of those 5 days was my birthday. I also started physical therapy 3 days a weak.

1 month after treatments. I took my first steps. My knees where locked shut. I kept getting better. But 2 weeks after my accomplishment, I relapsed. I didn't go completely paralyzed, but I lost all strength. My neurologist diagnosed me with Pediatric CIDP.

After a year, my parents thought the problem was the fact that I wasn't able to go to pediatric neurologist so we begged my insurance to let us and we got approved a month later.

That neurologist said that the reason I lost all strength was because my knees being locked was affecting the nerves in my legs. He sent me to get knee braces and he also thought that I might of been a little depressed from being disabled for so long. And he thought a service dog might help me with balance and emotional support.

 I got my service dog the same day I got my knee braces, it was a coincidence. And then I took a couple of steps with my service dog and my new knee braces. It hurt but I was so excited!

It's took me a year after that to be completely normal and my neurologist said I still have some nerve damage but not enough to cause any problems and I do not have a good reflexes and I might not get them back, but I should be fine.

Today I go to school normally, I'm on zero medication, I do not wear the braces anymore, and I'm a dancer now :-)

Thank you for letting me share my story, this is the first time I've actually spoken about it since it happened.

My Instagram is @julianna_banana02