Changing Doctors

Been a few weeks since I was on last. My EEG came back normal (no surprise there).

I'm going to change neurologists. Mostly because mine is too far away and in a place that is too difficult to drive to for the people who have to take me to my appointments, but also because I just don't feel like this guy quite gets the gravity of just how bad things are for me.

I even had an episode right in front of him. My muscles will seize in my neck and pull it to the right, and it's like my brain hits the reboot button. I looked around and was confused as to why I was there. I figured I must have had an appointment and everything looked familiar, but I had no idea what his name was right then, what we were talking about, and why I was there. That's pretty typical for these spells. It all comes back to me eventually, but dang, they are annoying! I even gave him my old birth name instead of my actual name!

He wants another MRI (which I already know won't show anything) and he'll see me back in a month.

I don't care about diagnoses. I need my doctors to start addressing my symptoms and helping me mitigate them NOW. I really need a wheelchair so I can go outside my home safely without falling. We're working on raising money for me to get a service dog and help me out with the random bouts of blindness and disorientation so I stay safe. I asked my doc for something to help with the dizziness, vertigo, and nausea so I can EAT (I rarely eat because I have no appetite and feel sick much of the time) and he said "Let's see how this goes first."

Are you kidding me, dude?

Arrrrrgh! Just gimme a script for a stupid wheelchair, some drugs for the nausea and dizziness, and my service dog, and I'll be back out taking over the world in no time.

Hi Lauriel,

Yes, if no confidence in that Neuro change him, EEG's are notorious for coming back normal even when something is going on, in fact most times they do come back normal, many people with full blown seizure's get a normal reading and Dr's absolutely know this.

I was having seizures and they got worse yet the EEG showed nothing.

The episode you had in front of Neuro is EXACTLY what happens to me, the muscle in neck seize and my brain feels like it hits the reboot button, the best way I can explain it is it feels like my brain "shifts" I can literally feel it, then confusion, then not knowing where I was or giving wrong information, can't think of address or phone # sometimes feel like in a dream then it will pass.

First Neuro I explained the feelings to said oh, I sure hope that clears up, are you kidding me!!

I had 2 major episodes of the brain shift then confusion, massive nausea, electricity in arms and ended up in the ER, diagnosed some kind of seizure. They used to be really bad and also had absence seizures, only happens sometimes now.

A few thoughts for you, yes definitely change Neuro's, seems to be if they can't actually see something they think it's nothing, shame on them and they should listen and go by your symptoms, you need help.

I'm thinking a PT could help you, mine was actually fantastic, the PT can write a report for you to say for eg disability, Neuro's etc and say they feel you need a wheelchair etc, that can go a long way with getting you help as they are the professionals who examine and observe you and can make that call.

sorry, not sure what happened to you but a therapist can also help with the dizziness, vestibular therapy. Can your own Dr give you something for the nausea??

I know exactly what you are going through and the feeling that no one is listening, you know how you feel and what's happening, it's just getting someone to listen and they are out there.

It is not normal for your brain to feel like it's rebooting, the confusion you are describing is not normal either, something is going on, it is so frustrating I know.

Those spell you have are awful and frightening. all you are describing is typical for a brain injury.

Wish I could help you, see if you can get to a PT for help, take care.