GBS story

I was diognosed on oct 8 2013 in Christchurch New Zealand. I had just been to europe and picked up a cold at Oktoberfest festival in Munich in late september. Upon arrival back in NZ I went to bed on the 7th of october at around 11pm non the wiser of what was coming in the next few days! I woke up the next morning (7 hours later) and could barely walk, I had very noticable weakness in my feet and hands. Went straight to the doctor and was told I probably have GBS within 5 minutes, fantastic work by the GP and half an hour later I was in the ER seeing a neurologist. By the next morning I was almost 100 percent paralysed below the waist and another 24 hours would see me paralysed below the neck in ICU and very close to needing a ventilator. I never felt anything changed with my sensation, no pins and needles as people talk about and absolutely no pain, the only problem I had was not being able to move and getting short on breath! I had the course of IVIG treatments from day1 and as my progression of weakness was fast my Neurologist upped the dose of IVIG for the last few days. On the fourth day after onset I was in ICU and showed no further weakness and my limited breath as measured by a FVC test showed that I had hopefully stopped decending into weakness. I went downhill very quickly but only declined for three/four days. Its impossible to know why I didnt keep going downhill but I cant help but think the quick actions of the doc and her foresight to increase the IVIG dosages helped a lot. After about four days of GBS my lungs showed signs of further strength, I regained somewhat of a cough and was transferred out of ICU to the ward. a week later I was able to sit up on the bed and was transferred to a rehab hospital close by. Over the next four weeks I went from Electric wheelchair to manual wheelchair to Walker to crutches and to independent but very slow and weak walking. I consider myself very lucky. I was allowed to go home after a month total in hospital and have been out of hospital for just over a month now. right up until this day I have not felt any tingling/numbness or pain. I also seem to be the same fatigue wise, I am very fortunate.

Probably the hardest thing for me through this is the mental battle with it, I am only 26 and am an airline pilot. I spent the first half of my 20's studying and spending a lot of money and time trying to make my dream come true, I had only got into an airline last year and now it seems I am in a whole lot of debt with possibly no more career. That is very hard to take in. However I am determined to try and get back to it, luckily for me the only symptom I had was weakness and I am making a good recovery so I will not let my dream die yet.

I wrote this story to try and provide a positive outlook to people who are going through this, or loved ones watching someone go through it. I found that there are a lot of horror stories out there with GBS but I can assure you there are lots of successful GBS cases too. I suppose if you have a four week bout of GBS and make a full recovery quickly you may not find these forums as life returns to normal pretty quickly.

I have not had this syndrome as bad as many poor people have, but I did get a glimse of what it might be like as I descended into it very quickly. just over two months on I can walk normally, jog for very short distances and semi run for a few seconds. My hands and ankles are still getting stronger. I have returned to work in the office as I do not have an aviation medical yet but will try for it in due course.

This was a very abbreviated story but if anyone wants to know any more please feel free to comment or ask. I will recieve an email notification and will endeavor to reply ASAP



Quite an ordeal. On the negative side you've been through a lot; on the other side you've made remarkable progress in a relatively short time. You can walk properly and even jog for a short amount of time.

Given your motivation you will continue to improve, and without the foot pain that many GBS survivors battle on a daily basis. As for myself it is a longer journey. From vent to wheelchair to walker to crutches to 2 canes to 1cane. 13 months out and still progress but at a slow rate even with therapy 4 days a week.

Went to the store today to pick up a couple Christmas items and I was frustrated with my slow pace and sore feet. Just about then I saw a woman about my age (65) using an electric wheelchair with a stick shift. I can tell you I stopped being frustrated and welcomed the fact that I could walk at all.

Hang in there, you're 26 and can make your future as positive and productive as you want.



Hi Tom -

You are doing great and I think it helped you were identified early. It sounds like you are rebounding quickly.

80% of subjects make a full recovery but it does take time, soo much time.... to recover. If you don't have the fatigue then you are very lucky. I expect you will be working soon enough. Just need to get through the period in between.

Good luck on your recovery. Truly I feel for what you are going through.