October 8 2014 was my last normal day . October 9th I started to feel tingling and numbness in my hands and feet. I felt weakness in my knees and fumbled things with my hands. So Friday the 10th I went to the ER and had my first lumbar puncture so they could look for elevated protein in my spinal fluid they did think I had Guillain Barre syndrome at this point. The spinal fluid did not show evidence so I was sent home. I got a spinal headache on Sunday went back to the emergency room for a blood patch to relieve the headache. I was sent home once again because my symptoms were not classic Guillain barre syndrome. Monday I was able to see a neurologist who then admitted me to the hospital to begin treatment which was IVIG immunoglobulin therapy. My leg and arm weakness and increased for a few days and then plateaued after getting better for a few days. Now I have shoulder pain that could be due to overuse or just another symptom. I've been lucky because I have not had to be put on a breather I have had no paralysis. I'm on my way to a rehabilitation facility, and I will keep you posted.
aimeelou22 aimeelou22
41-45
4 Responses Oct 21, 2014

I was diagnosed last summer with GBS. I went four times to my local hospital. At which point I was never diagnosed. Long story, but my sister ended up driving me to another hospital 30 minutes away. I was diagnosed there with GBS. I ended up paralyzed up to my neck. I spent two weeks there in the Cardiac Ward, because of my breathing, then two weeks in in my home town hospital. Then finally I was transferred again to a rehabilitation centre. I spent 9 weeks there. In total, I spent 3 1/2 months in hospital. Being a single mom, it was extremely hard but I'm just glad I'm walking again. I just saw my doctor & I'm doing really well considering the nerve damage. I'm still not driving or working but I'm a very optimistic person! I would love to hear from anyone who's going through GBS & understands the difficulties like me.

It's now 4 months later, I'm not taking gabapentin anymore. I'm taking an antidepressant. I thought I was doing a lot better, I tried working for a few hours a couple times a month but the past few weeks has been rough. I just don't have the energy to do the things I need to do.

GBS symptoms do get better S L O W L E Y ! One of the most difficult things for me was and continues to be patience and compassion with my body...Be kind yo yourself; as kind as you would be to a good friend...joyinthejourney, clg

How did the doctor diagnose you if the csf was negative? Did you get an EMG done? I was just in the hospital for suspected gbs, but EMG and spinal were negative :( I'm still experiencing very slowly worsening symptoms. Just more curious about your experience. Hope you feel better!

They wouldn't diagnose me in the ER, I had to wait a few days until I could see a neurologist and then she admitted me to the hospital for treatment. I never received confirmation from my spinal fluid even after the second lumbar puncture.

I had every imaginable test including a spinal which came back negative. Two doctors recognized my symptoms but the final confirmation came from a neurologist who did a nerve conduction study. I then received IVIG treatments for the next five days. By then the paralysis had reached my waist, up my back, I had difficulty swallowing, breathing & talking was exhausting. The IVIG treatments seem to slow the progression of GBS. I was extremely fortunate I didn't end up on a breathing machine. However I did end up paralyzed to my neck. That took a full two weeks to happen as I had slow acting GBS. I hope this helps you get a diagnosis. Be persistent! Good luck :)

I really feel for you. I got mine in 2008 but I've go a bad variant and I had to spend a year in hospital. Now I am a poet and satirist. All the very best to you. Hope we stay in touch :-)

hey, thanks for responding. I'm almost done recovering. it's hard to believe that one month ago i was still so dependant on my family having just been released from the skilled nursing facility where i had some rehab. i have been VERY lucky having read about others' experiences, like yours. i couldn't even imagine being completely paralized or hospitalized for so long. the week i spent in hospital was such an eye opener. trying to stay positive, the feelings toward all the different nurses, getting tired of my husband but also so grateful that he was there with me, the food (yuck), not being able to feed myself, the wondering, is this actually GBS? they never got confirmation in the spinal fluid. i need to go back to work now but I'm very unmotivated. my shoulders are still the weak spot, i get tired sooner than before i got sick. i had a physical job before doing landscaping and I'm a farmer. now what?