Lets Hear it For The Nurses!

Hi – After many years of knowing ‘something’ was not right and numerous trips to GPs, Neuro’s, & second opinions (one neuro was so frustrated with my – its gotta be something! questions she said ‘I’ve told you all I know!’). I knew it was ‘something’ but never once for many years was GBS or CIDP mentioned.

I finally had a total neuro lock-up and was admitted to the hospital – slow but sure I regained about 50% feeling and mobility and appeared I was getting ‘better’ from whatever it was. I still knew it was ‘something’.

One night a nurse came to my room and asked how I was doing and glanced at my chart … asked a few questions and in less than 5 seconds she asked me if I ever heard of Guillain Barrre’ – I told her it sounded like a guy who played linebacker for the Green Bay Packers in the 1930’s. She laughed and said she’d make a note in my chart for my doctor to look at. She did and my doctor said ‘I think she’s on to something’ and he pursued it with vigor and a final diagnosis of CIDP.

A gentleman from the GBS Foundation left me the Overview Booklet and upon reading it – I was amazed that everything I was trying to describe to the doctors for years was right there – kind of like reading a book about a place I visited on vacation and was very familiar to me. It was indeed the ‘something’ I knew I had.

I was put on plamaphersis by my now dual neuros’ – only much later did I learn that research indicated IVIG should have been the first treatment and they really weren’t communicating with each other anyway. Plasmaphersis did not work (for me); I was ‘doctored out’ and just went home to deal with it best I could. After about 4 years of that – and knowing my neuro would prescribe IVIG if I asked – I did. It took another 8 agonizing months to get my insurance company to acknowledge coverage – I was a wreck by then.

I began the IVIG standard loading dose and after 3 treatments (days) I could feel my hair and the wind on my skin – though late in the game it worked on me – and twelve years later still does. If I had been diagnosed early on and given the proper initial treatment, I believe I would be in better condition today.

The nurse, who I never got a chance to say ‘Thank You’ to, was spot on in seconds! While I certainly don’t recommend nurses giving final diagnoses, they see this stuff on a more regular basis when dealing with patients and should be at least listened to. Maybe this nurse ‘did it the right way’ by jotting that simple note in my chart and maybe I was fortunate to have a doctor who was willing to consider her opinion – who knows.

I always talk to my nurses and find most to be a very good resource. God Bless Them All –