Neurology is full of adventures

I posted on my Instagram last week but I feel like I'll just recap it here to stay consistent. I'm nothing if not consistent, guys. 

If you've been following for awhile you would know that neurology is just one of the many specialties that I visit, but I don't go very often. This summer I went for migraine follow up because my medication just wasn't working, and that's when I discovered that the super great neurologist I've had was now gone. I've gotten information that she is at one of two places in town but to be honest with you, she bounces around to different practices every couple of years and I just can't keep up. I was reassigned to another guy who really wasn't helpful at all. 

He wasn't even that nice. 

I had specific questions about my memory, if it'll get better, what should I be concerned about, etc. and his actual response was, "Oh... that's interesting" and he left the room. That was the end of my appointment. In this appointment notes he indicated that I was just depressed. 

To say I was angry is a complete understatement. I decided right then that I was going to get a second opinion, from literally anywhere else, because that's just terrible. 

Fast forward to last week.. or the week before? I honestly can't even remember when this was now. I had Matt come with me though because I feel like doctors take me more seriously if I have him with me. I don't get brushed off and they actually ask me questions versus make assumptions just to get me out the door. 

We met with a very nice nurse practitioner who stated that most of the people she sees with my issues are elderly, so quite frankly, I'm kind of an anomaly, and she is a little out of her wheelhouse. The point of the appointment was to gather information to see if I needed to see a neurologist and which one, OR if another specialty would be better suited for my issues. 

We spent over an hour answering questions, she actually took a copy of my two pages of notes, she went through things one by one. I felt like she was taking me seriously and treating this like it was something to be looked into. After almost two hours, the game plan going forward is: 

• A new MRI. She suspects there has been some kind of change in my brain, so a new MRI is being ordered and it'll be compared to the ones I've had in 2018 and 2016. If there is no change, that's a whole other ball of issues we'll deal with if we get to it. If there is a change, then I guess we deal with that. I honestly don't know if I'm hoping there is a change or not at this point. 
• A sleep deprivation EEG. I am absolutely exhausted every day. I know a lot of you are like, "Ugh, same!" and no, no it isn't the same. It isn't even close to the same. I know what kind of tired you're thinking of and this is not that. Have you ever stayed up for 36+ hours and then had to drive a long distance and then go to work? You're so tired even your hair hurts because your entire body is screaming to shut down already? That's me on a good day. I have many days where out of nowhere, it feels like my body is literally shutting down. I have to get to a bed, or a couch, somewhere that I can lay down and I will fall asleep for hours. I can't do anything to keep myself awake, it really feels like I have no control of my body shutting down. Frankly, it is kind of scary. But because I'm in this utter exhaustion state 95% of the time, my brain just isn't working well. Almost all of my issues get worse the more tired I get, which makes sense. She wants to see what my brain waves are doing, but specifically when I'm tired. 
• Neuro-psych testing. I'm a little nervous for this one because on the one hand, maybe I've gotten better in some areas and that would be reassuring. On the other, what if I'm worse? I don't know if I want to know, to be honest. I've put off retaking this for a couple of years but it turns out that I can't put it off anymore. So I'm a little nervous. 

Once all of that is done, I'll meet with a neurologist in June who will go over everything and what it means. Some concerns are that I'm getting worse, certainly. Another option is I've not gotten worse but I also haven't improved at all, which means the chances of me getting better are diminishing to nothing. The other possibility is that I may be having seizures or on my way to developing them. Some of what I call my "brain blinks" sound like possible seizure activity to her. The other possibility is that I am a repeat stroke risk and that we need to look into that. 

It sounds like a LOT, and it is, but I also left there feeling hopeful. I mean, having seizures and maybe a future stroke sound awful, but I guess at least I'd know? I can prepare for it? I guess it would be better than being surprised and terrified. I don't like surprises, but at least this might help me feel less scared? I don't know. I say this now but I'll probably be terrified if it happens so ignore me. 

That's my scoop. In March I see rheumatology and endocrinology again, and I think I am going to bring Matt to endocrinology for sure. I don't think that guy takes me seriously at all. Now that gastroenterology has basically given up and said it is either auto immune related or my adrenal insufficiency not being well managed, I feel like I am starting all over from there. 

I'm just crossing my fingers I can get some solid answers, either way.