Living with Guillain-Barre Syndrome

The first time I had GBS I was 20 and in college. I thought that I had the flu until my right leg went completely out and I couldn’t move. Then, it progressed from my legs to my chest. I went the doctor on a Tuesday and was admitted into the hospital by the following Friday. I was given a nerve conductive study and a LP (Lumbar Puncture, and there was an elevated level of protein in my spinal fluid. I had plasma freis and it took about 7 months to recover.

Then, I got GBS again at 26. I had the same symptoms, but I was told at 20 that I could never get GBS again. The doctors were wrong. I began to fight for my life all over again. This time, I had a different neurologist and he give me IVIG, which only worked for a short period of time. Eventually, I went Emory Hospital in Atlanta, and they were able to give me plasma freis, which saved my live. This time I was completed paralysed for 2 years. I didn’t have use of any of my limbs, and while I was in the hospital the GBS began to attack my eyes. I ended up in a PT/OT Rehab hospital because I had to learn how to walk, drive, and write all over again.

Please take me advice, I wasted 2 years of my life fighting this horrible syndrome. Please try other doctors, if you are not getting better. Life is too short to be in the amount of pain that GBS causes. Now, I’m 31 and I’m always worried that something I may do may cause me to get GBS again. The doctor I have now, says that you can get GBS multiple times, so I’m happy to be a alive and I hope my story helped you.