Reply To: Was I misdiagnosed? Here's my strange GBS story.

The diagnosis wasn’t made in the ER. The ER doctor’s exact words were, “I am at a total loss. I have no idea what this is”. The ER admitted me to the hospital to try to find a diagnosis. I regret agreeing to it.

The diagnosis was made while I was an inpatient for five days. The doctors went back and forth for days – with each other – on a diagnosis. Finally settled on a full blown GSB diagnosis but a second opinion later that day said I had a mild version. That doctor said a spinal wasn’t even justified given my symptoms, so I was certainly justified in refusing. (Not to mention my lumbar and sacral injuries.) And told me I was free to go home.

So I spent three days being told that A) I was dying and 2) that I needed blood transfusions or chemo just to be told, nah, it’s not full blown GBS, so you you can go home, no treatment needed. I Wanted to kill someone! My case was not handled well at all. Hence, I have some misgivings about the original AND final diagnosis.

My lack of confidence in the doctors was based on their behavior towards each other and their contradicting each other. Example: The neuro encouraged me to get up and walk while the primary told me to be immobile. The problem wasn’t the neuro, the problem was the primary. The only issue that gave me pause about the neuro was she couldn’t figure out if the GBS was escalating or resolving. She said mine seemed “sneaky”. SHE didn’t want to start treatment right away because she couldn’t figure out the GBS course, nor had she decided whether or not it was in fact GBS. The primary demanded I choose a treatment immediately.

Once I had him kicked off my case, progress was made. He was resisting my second opinion… Had I not doubled down on him and removed him and insisted on a second opinion, I would have treatments I did not need. I can’t help but wonder if I was misdiagnosed. I was told the GBS would resolve in weeks but that’s obviously not the case. (The primary I am referring to is not my family doctor – it was one of the doctors in the hospital.)

Sorry for the rant, it doesn’t matter how I am at this point I suppose, Im just trying to understand this. Do I be worried? Just let it run its course? Do i need monitoring? I don’t know. I’m thoroughly confused and …Yes, a bit frantic.

It’s three months later…Some days the legs are very tired and weak, some days seem fine. Some days they go from fine to bad in a matter of hours… And several times I thought the full blown attack was coming back but it settled down. So, after being told this would “just go away on is own”, here I’m learning that it doesn’t, that it stays! Forever!

*cries*