Living with Guillain-Barre Syndrome

Hello. I am writing this on behalf of my girlfriend. She is 35. And actually, we went to the ER the first time on the night of her 35th birthday. Her first symptoms came a few days before we actually went to the ER. She had numbness in her toes and fingers at first. Nothing else, just finger and toes. Within 2 days she could barely walk, wouldn’t eat, and could barely stay awake. So we went to the ER. They gave her some narcotic painkillers, took some blood tests and referred her to a neurologist over 3 hours away. So we went home. NOTHING got better and 2 days later went to a different ER. They prescribed her a different painkiller and sent her on her way. Well, after no relief still, we started doing our own research at home. Her ex-husband is a nurse and he gave the name of Guillaine-Barre Syndrome. Well, from what we were reading and what she was experiencing, we decided to go back to the ER with our newfound knowledge and DEMAND answers!!!! We arrived at the ER and one of the nurses recognized us in the waiting area and got her a bed immediately. Within 1 hour, she was getting a spinal tap, and an MRI 3 hours after that. She was then admitted to the hospital. Her symptoms at this time were high blood pressure face droop, no ability to walk on her own, EXTREME back pain and zero appetite.

It took them a day of blood work to determine what we pretty much already knew. She was diagnosed with GBS That night they started the Globulin treatments through her IV. It’s similar to having a blood transfusion, but its the globulin part of the blood to add antibodies to the body. She was given these treatments each day for 6 days. During her stay her heart rate skyrocketed and we ended up in the heart-monitor area for a day. All in all she was in the hospital for 11 days. It seemed as if the treatments were working very well!! She was doing limited physical therapy in the hospital and instead of moving her to a rehab floor, we requested to just bring her home to her family!!

She was recovering with PT somewhat fast at home. She was able to walk without the walker within 3 days and she started getting more and more feeling each day. She decided to stop taking the Neurtontin after she got out of the hospital for fear of seizures She also cut herself off the narcotic painkillers within a week as well.

So it seems, because we treated this disease soon after the symptoms began, she started to have a fast recovery! So we thought. The day she was admitted to the hospital was September 7th. She left the hospital on the 18th. On October 20th, she felt ABSOLUTELY ZERO numbness, and felt the best she has felt since before this horrible disease started.

The following day, the 21st, things started getting weird again. She has been experiencing arms and back pain. Her skin feels its on fire. She is dizzy and hot. She also says it feels like rats are eating behind her eyes. We are not quite sure what to do at this point. We have no health insurance and so far, the total bill for everything she has been through is over $70,000. Any help, advice, tips, insight or whatever anyone can share would be awesome!!

Thanks for taking the time to read out story and good luck to everyone else out there in the same boat!!