Lucky, lucky people…..what I’ve been told

February 14, 2011 at 10:36 am

Good morning,

I have had the experience of going through GBS two very distinct times in my life.

I am now 36 years old (halfway to 72) and was dx’d the first time in 1993 around 18 years old. The second time I was dx’d was in 2007 when I was 32.

I attended the symposium in Chicago a while back and was explained that propensities for getting GBS again, are being “re-examined” because of a higher number of people having it multiple times. I don’t disagree the figures of 1 in 100,000 and then 1 in 100,000 getting it again – but I was explained that is what is being reviewed by the experts.

As I understand it, this particular autoimmune class of illness is always evolving – just a few years ago, there was no Miller/Fischer varient nor was there a CIDP classification several years ago…..

I try not to get into discussing the severity of either one of my episodes – I was on the vent both times – and spent several months in the hospital….and I personally know several people and have talked with them that have had much, [U]much[/U] worse cases than mine.

The second time was much different than the 1st. 1st time I was a college freshman, ready to whip the world. Rehab was relatively good with little to no residuals.

Second time, I was 32 with a family, and a pregnant wife. Right smack in the middle of an ice storm. Rehab took a while longer, but I’m doing really good now. I’m blessed with a great family and many of the abilities that I had before. My only residuals are in my feet (icy cold with tingling pain) and the loss of a crainial nerve that controls the left side of my face. I get by – it took a long time to be able to blink that left eye, but it blinks on its own now – no more lacrilube in the eyeball at night.

All in all, I’m really happy with my progress – I do still get a bit anxious when I start feeling bad. We were pounded with over 20″ of snow this past couple of weeks with temps below zero. When the power flickered, it seemed like deja vu’. But everything worked out and things are warming up now…

For the longest time, I wondered why and what was it all for and all that jazz –

Now, not so much.

Several people still tell me that I should buy a lottery ticket though.

Brett R. Harrison