GBS Recovery Story (Long One)

Sorry about the length of the story but I started writing this down and just kept spewing more out as I recalled more of it.

Some background, this all started in 1999. I was 21 years old. Overweight, very inactive lifestyle.

The first I remember noticing any issue was that I was sick as a dog with the flu for a week straight. I returned back to work after a few days off because of it.. I worked in a huge building and we were on the 39th floor. So as I was going up in the elevator I recall feeling dizzy. I thought it was just because of the fast movement of the elevator coupled with the fact that I was ill the week before and still taking over the counter cold medicine. That was on a Friday.

So Saturday morning I woke up and recall my foot felt like it was partially asleep. It was tingling and not quite numb but felt like it does when you sit on it for a while, just tingling pins and needles, I never gave it a second thought. As Saturday afternoon rolled around I told my wife that it was odd that my foot still felt like it was asleep the whole morning. By the early evening hours it was into my lower calves and I was getting worried, I am overweight and my first thought was diabetes. So off to the ER for me. I went to the ER and they tested me for Diabetes and of course it came back negative. They suggested that for insurance reasons that I should get a referral from my PCP for further tests. So I went home from the ER and made an appointment with my doctor for Monday AM.

Sunday was pretty much more of the same, pins and needles all up my lower calves and having to hold onto furniture as I walked around the house since my feet were almost completely numb and calves were pins and needles. I went to bed on Sunday night, I woke up at around 3am having to go to the bathroom, I reached out for the dresser when I was getting out of bed to brace myself and even with that, I dropped like a sack to the floor as I could not support myself. After hollering for my wife to help me up, I got back to the bed. She called into my doctor’s office asking if I should try and come in there or what and he instructed me to go back to the ER ASAP.

So back again I go to the same ER, this time of course they run some more tests. CAT Scan, X-Rays, more blood tests. Then this wonderful doctor comes in and says they are going to have to do a lumbar puncture, of course in laymen’s terms that is a spinal tap. Needless to say, I was NOT thrilled at all to hear that. They ended up telling me they found a dark spot on my CAT scan and they would likely not be doing a spinal tap, I was relieved. They put in a room in the ICU. Then they came up and told me that they were going to have to do the spinal tap anyway. Well that was far from fun as the idiot that was doing it had about 4 med students observing and she said she had done lots of these and after it took her 10 minutes of digging around in my back with a needle and couldn’t hit the spinal fluid I called for a new doctor. They took me to the X-Ray room and while I was under the X-Ray they used that to locate the spinal fluid and finally got their sample. So I was in the ICU again still with a respirator sitting close at hand, didn’t know why at the time but later was told it was in case it affected my lungs and they had to use it for me, I just thought that it was in the room from the previous patient.

After about 2 days in the ICU I was told the diagnosis was Guillian Barre Syndrome. I gave them the same response that most people I tell this to now do. What in the world is that? I had never heard anything about it, my typical response was to Google it but seeing as I didn’t have my PC, I got the cliff notes version from the doctor and had my wife go home and do some research for me. On my first day at the hospital they took me for a physical evaluation, had me walk across a platform surrounded by bars to hold onto. I was able to stagger my way across, mostly supporting myself with my arms. On day 2, I was unable to get up out of the wheelchair. So they have me going to physical therapy for a couple days pretty much not doing anything other than that, I think at that point they were discussing what they wanted to do. Well I didn’t want to eat really because I couldn’t taste anything and it make it tough to chew, so I ask my doctor to put me on liquid diet so I can still get something to eat but keep up my strength. Later that would be found to NOT be such a great idea as my 1st wedding anniversary came while I was in the hospital, my wife came in with a small cake, and since I had an order on file for a liquid diet, they wouldn’t let me eat any. Anyway… So they came in on day 5 and said they were going to try and administer immunoglobin therapy, which would be 5 days of IV bags and see if I responded to that. The next step was plasma pheresis (sp) which is the equivalent of a blood cleaning. So after about 3 days of the Immunoglobin I am getting frustrated and upset because it didn’t seem to be doing ANYTHING at all. I was not even feeling a little bit better, On day for, HELLO, welcome back nerves, which I later realized was a welcome feeling but not pleasant. My legs hurt like hell from all the nerves coming back, was like that feeling of when your leg wakes up from being asleep but severe pins and needles ALL DAY LONG. So like an idiot I requested something for the pain, they gave me Ativan and Darvocet. Whooooo after that concoction I was out for the count but much more comfortable.

After I started getting some feeling back in my extremities they moved me to the physical therapy wing so I could continue to try and get my strength back and re-learn walking and tying my shoes and stuff like that so it was daily physical and occupational therapy. I worked my ass off in PT. They would tell me to do like 10 reps on a excer-band, I would do 50. The nurse would ask me why I was doing so much, I said, I don’t know about these other guys in here but I have no desire to be here longer than I have to be so I wanna work my butt off and get better. By the time I left the hospital I went home with a walker and a cane to get around. While I was home, my doctor encouraged me to take it easy, not this hard headed guy. LOL. I worked light weights, the excerbands, I walked around as much as possible. 3 weeks later I returned to work, I typically took the bus to work but I drove to a park and ride to get to the bus. My first week or so back to work my wife dropped me off and picked me up from the park and ride. After that I went back to the doctor and he did a reflex test and released me to be able to drive again. It has been many years since this occurred and even now writing it I am getting a little emotional. There is A LOT more to my story, little details and issues in the hospital.

Since my days in the hospital I put on a lot more weight. Topping out at around 345. I started about a year ago trying to eat better and get more exercise. I did a 5k Fun Walk last summer and it really was great. At this point I typically jog a 5k almost every day. Not setting any records for time but around 45 minutes is average. I am down to 275 and still loosing more. If anyone is interested in the expanded version of this story I am going to continue to work on it as writing this much down has sparked so many memories both good and bad. Thanks for taking the time to read it, and if anyone has any questions, comments, needs to talk to someone who’s been there, drop me an email. egenlauf@msn.com

-Mike