Living with Guillain-Barre Syndrome

I am 53 years old. I had terrible back pain and head ache for a week between Christmas New Year’s Eve, while we were in VA. I was using a heating pad most of the day and nights. I tried sleeping on every bed and couch in the house and could not sleep due to the pain. On New Year’s Eve, I was having numbness and tingling in my toes on my left foot. New Year’s Day, both feet were effected, then up to my knees and then my arms and hands were tingling. I was thinking, what the heck is going on?

By January 5, 2009, we left for home and I could hardly lift my legs to get into the car. The next day,my husband drove me to get acupuncture to see if I could get some relief….it did not help. The next day, my husband insisted I go to the doctor. I tried to get upstairs and my legs collapased. I also was also not eating much due to the pain. When I got to the DR. he said my blood pressure was 198/115 and my heart rate was 200!! He did some tests and said I was dehydrated and to go directly to the ER before my heart wore out. I weighed 103lbs. I normally weigh 115.

At the hospital they took 8 vials of blood and started an IV. They did numberous tests and did an MRI of my whole body and head, cat scans of my head and torso, x-rays of my chest and stomach.and only found a lump in my breast, 2 degenerative discs in my neck and 2 herniated discs in my back. That was Wednesday. Thursday, The neurologist made me get on the floor and try to get up. I could not. I was really humiliated and depressed. I was really nauseous as well. The ortho guy suggested GBS They decided to do a spinal tap on Friday about 11 am and had to lay still for 12 hours. (To avoid the headache- my head hurt so bad, I don’t think it would have made a difference) Took 5 vials of spinal fluid out. They put a catheter in, since I was paralyzed from the chest down at this point. I was actually relived to not have to get on the bed pan. Sometime in the afternoon they told me it was GBS, due to the increased protein in my spinal fluid. The doc wanted to start me on IVig immediately. It took until 8 pm to get the first treatment. I had 5 days of IVig. I had trouble breathing as soon as they started the treatment, so I got a round of benedryl before each treatment.

They sent me to another hospital for the EMG tests. I think I went on Sunday. Monday, I couldn’t swallow so they moved me to the ICU. I was paralyzed up to my throat. I never had a ventilator. Luckily!! The doctor wanted me to have a feeding tube down my throat or through my stomach, I refused. I could swallow after 4 days. They had me on a heart monitor because they could not get my blood pressure or heart rate under control. They put me on prednesone for the headache and back pain, it helped after a week. I had a bladder infection, so they had me on antibiotics. I got a shot every night in my stomach to avoid blood clots. I refused any narcotics for pain. Just what I needed, to recover from GBS and a narcotic addiction.

After 2 days in ICU I was moved back to the Neurology unit. I was moved to a rehab center on Sunday January 18. I was still paralyzed. Once I got to the rehab, they weighed me- 91 lbs. I also had a horrible tight feeling around my stomach. It felt as though I has a corset on as tight as someone could get it. I checked myself out 7 days later. I decided I would do better at home and come back for rehab workout 3 hours a day. I was sent home with a wheel chair and walker. I was weighed at the rehab about 2 weeks later, and I weighed 82 lbs. Used the walker for a month and then a cane for another month. After 3 months I could walk without a cane, but very wobbly. Everyone was giving me a hard time about eating. I needed to gain back about 30 lbs. I never felt like eating. Until June.

It has been 6 months since I was diagnosed and doing most everything I did before. I can even pick up my grand daughters who are about 1 1/2 years old.

I weigh 104 lbs. I still have numbness in my hands feet and face. I can’t wait for that to go away- boy is that annoying. I do not feel comfortable driving, since I can not feel my feet. I can’t keep shoes on my feet either. So, I wear sneakers. I am still tired, but that is getting better too. What a long haul. It is awful to have to depend on someone for everything…… bathing, washing your hair, even wiping your butt. It was really depressing. I found reading these stories about others with GBS helpful. I know everyone is different and your recovery will be too.

My husband was so great through this whole process. He learned how to do laundry, cook and make ice tea. We are thankful he retired last August, but I’m sure he did not think this is what he would be doing during his first year of retirement. I am blessed to have wonderful family who took care of me.

To everyone who has GBS and is still recovering, it will get better, it just seems to take forever! I am thankful I am still here and can walk. I have a new out look on life….if you don’t have your health, you really don’t have anything, and if you don’t have family and friends you can depend on, you’re screwed. My body will never look the same but I don’t care about that any more. I am not vain, as I was before this experience. As long as my body gets me where I need to go, I don’t care if the skin is hanging off of my bones. GBS is a humbling and terrifying experience. I’m glad its almost over! Good Luck to all of you during your recovery.