Living with Guillain-Barre Syndrome

HI! I am just recovering from GBS and wanted to share my story so that folks that read your page might be given hope.

My name is Dominick and I am a 45 year old man who until January 19 of this year was healthy as anyone I have ever met. I had never had a serious injury. I had never been in a hospital. I was at work on a Saturday afternoon and began to feel tingling and numbness in my hands and feet. I didn’t think too much about it at first. When it continued and began to worsen Sunday afternoon while I was at work I started doing research on the internet to try and figure out what was going on with my body. At about 2pm I stumbled on information about GBS. Of everything I had read up to that point this was the only malady that fit all of the symptoms I was experiencing.

As I read I became very frightened. I tried to put off the inevitable and did not contact a doctor but rather continued to work. As the day progressed I began to get worse and worse. Finally I called my wife and expressed my concern to her and told her that I thought I had GBS. I also sent her a medical power of attorney via email. This is how certain I was in my gut that I had GBS and that I was going to experience a major event. That was at 6pm. By 10 pm I had lost the ability to write my name and was beginning to have serious problems walking. The numbing and tingling and steadily worked its way up my legs and arms. By midnight I started having trouble breathing. Time to call 911.

I started making my way to the clinic in our shop which meant I had to walk about 100yds. Along the way I collapsed 3 times. Thank God the third time I collapsed two employees were standing close by and saw me start to collapse. They caught me and dragged me to the clinic. I had lost my legs completely. My two fellow employees called 911 and then called my wife who met me at the hospital. When the ambulance picked me up I told the paramedics I thought I had GBS. They kind of scoffed at me but made a note of it. When I got to the hospital I told the doctor who examined me that I thought I had GBS. He told me it was unlikely but that they would be checking me for several things.

After having a CT Scan, an MRI and a Lumbar Puncture as well as a full workup of x-rays, blood work, etc it was finally confirmed that I did in fact have GBS. I felt my world crumbling. I was as afraid at that moment as at any time in my life to that point. Everything I had read said that I was about to go through a very rough time. The doctors at the hospital said that they would be unable to treat me at their facility and that I would have to be transferred to University Hospitals in Cleveland Ohio. This would take place Monday morning, a mere 12 hours from the time I arrived at the hospital. In the meantime I did all of the things one might imagine one would do if one knew they were about to go through something which might take their life.

I called friends and relatives and tried to get the things said that needed saying. The next 8 days are very much like a puzzle with a lot of pieces missing. I was transported to University and my condition continued to worsen. The decision was made to use the IV-IG treatment for my case and treatment started almost immediately after I arrived at the hospital. By very early Tuesday morning the decision was made to put me on a ventilator as my ability to breath on my own was rapidly deteriorating. The hospital contacted my wife who had gone home to get some sleep. There was a terrible blizzard that morning and she was not going to be able to reach the hospital by the time I was tubed.

It was hard talking to her on the phone knowing it might be the last time but I remember telling her that I was going to beat the thing and set records doing it. I told her I loved her and not to worry, that I would be doing cartwheels before she knew it. After I got off the phone I was tubed and placed into an almost comatose state. The rest of my time on the ventilator is very much a blur and I have had to rely on family to put the pieces together. My wife was told that it was likely I would be on a respirator for 3 weeks. I was only on a respirator for 1 week. Off the respirator I was almost totally lifeless. I could move very little and was very weak. I was fed through a tube in my nose for 16 days and lost 25lbs. Once I was stable I was moved to a rehab facility.

After a lot of testing we were told that due to the extent of the paralysis I had and the loss of muscle I had experienced that I would likely be in a rehab facility for at least 3 months. I am here to tell you that miracles still happen. I had a team of 10 neurologists, 3 regular doctors and a whole staff of therapists following my case. None of them can explain what happened to me. I began my therapy unable to move on February 4rth. On February 25th I walked out of the rehab ward without so much as a cane. Every day was a miracle. I had also been told I would not go back to work for at least 6 months. It was 2 months and 1 week and I returned to work. I still have work to do to regain my muscle and endurance but every day it gets better.

Just wanted to let folks know that if you get this syndrome it is scary, very scary and you will go through a lot but do not be discouraged. Keep faith and work hard. I am living proof that miracles happen and that this syndrome can be beaten quickly. To be perfectly honest I look at the whole experience as a positive. While I was sick I saw so many people with permanent injuries. People with no support. People with no hope. My life was changed forever. I take nothing for granted now and am grateful for every day of life. I am grateful for the support of my family. I am especially grateful for my wife without whose support I do not think it would have been possible for me to keep my head above water. She was and is my rock and my heart. Thank you Cindi.

I am also grateful for the excellent care I received and for a God who is still merciful. IF you get this syndrome do not lose heart. Most cases do not create permanent results and you will recover. If you are the family of someone who has been diagnosed with GBS keep the faith for that person. They will experience a lot of different emotions and will need lots of help but with a positive attitude and a good support system of family they will do fine. I hope that this will help someone.