I was finally, properly diagnosed today. My new neuro knew exactly what it was the second I walked into his office: Sensory Polyneuroapthy, a form of GBS. I was diagnosed via EMG and NCS, not spinal tap, which I had refused. This neuro said i did not even need one and the NCS and EMG were the golden standard of diagnosis. So…My stubborn instincts were correct. I just had to find a doc who knew what the hell he was doing. He was also smart enough to treat me empirically with steroids to calm some of the massive inflammation which helped immensely.

I DO have a mild case…But a mild case that’s went untreated for nearly 5 months and spread into my hands and arms. The good news is, it can be tamed and shouldn’t worsen. Bad news, it’s going to take time.

This relapse, or whatever it was, started just like the first attack. Severe vertigo and severe weakness followed by attacking the nerves in my legs. The only difference this time is it attacked my thigh instead of attacking both calves and both thighs in both legs and this time it is resolving quickly. Doc thinks it’s something other than GBS because GBS doesn’t behave this way. Whatever it was, it’s pretty much went away. I had residual weakness in right leg from first attack and I assume it will still be there when this attack fully resolves. Doc says there shouldn’t be any weakness at all.

I refused a spinal. I will alwsys refuse. Too many disc and nerve damage to risk it. The hospital agreed to treat me without since it appeared the GBS was accelerating though it changed course and started to resolve.

Had a mild relapse and met with neuro. Naturally begged for a spinal. I set three conditions. 1. General anesthesia. Otherwise I will freak out and hurt someone and myself. I have before, I know I would again. 2. If I wake up with a weeks worth of a migraine because some idiot hit the wrong area, which is what causes the headaches in the first place, I will scream every single second until the migraine is gone. 3. If I get any more damage to my nerves or discs, I will murder the offender with my bare hands. Naturally, she couldn’t agree to a of my terms. She fully agreed to GA and would push the insurance to pay for it but could not guarantee no migraine or no damage. So nope. Nopity Nope. I may never get a full diagnosis due to this and I accept that but I know full well they can work around it. My insurance can kiss my royal American. They’ve demanded stupid, invasive stuff twice before and lost both times in litigation. If I have to, I’ll take them on a third time.

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*

At this point all that doesnt matter…. Im trying to figure out if lingering weakness is just the GBS running its course or if its still active. Im still learning about this and trying to learn. I dont see a neuro for follow up 6 weeks. Trying to learn as much as I can until then.

Because 1, I didnt trust their diagnosis, they jumped around and the two doctors kept wildly contradicting each other. 2. I have lumbar disc injuries and not worth the risk. My neuro agreed.