Tuesday, October 4, 2016

Return to Regular Scheduled Programming

So now that I've posted more than enough about Disney, The Mastocytosis Society conference, and Invisible Illness Awareness Week, I will now return to the normal posts that are oh so exciting recounting recent appointments, testing, and the random thoughts that go through my head. Some days I wonder why people keep reading... =P

Just before I left for Florida, I had my second EMG. I wrote a bit about what this is in an earlier post (here), but basically it is a test to look at how the peripheral nerves are functioning. The good news is that the EMG showed that everything is mostly normal when it comes to my peripheral nerve signaling. The bad news is that means we still don't have an answer for my odd numbness patterns and on going neurological symptoms...

The Saturday after I got back, I had my second brain MRI to see if things had changed over the course of this year. Thankfully, it was okay. Nothing has really changed since the MRI I had last year, but it was a tense week. I got a call on Monday (2 days after the MRI) from my doctor's office saying my neurologist needed to see me within the week. That's not usually a good sign...

Even after dealing with all this medical stuff for years, there are still moments of anxiety when it comes to dealing with potentially tough diagnoses. This time especially, I felt overly nervous. Something about the brain feels more intense than pancreas or adrenal gland issues. Obviously I don't want any of it, but the brain is just...well, the BRAIN. Not sure exactly how to explain, but issues with the brain just feel that much more intense since it's kinda the hub for everything in the body.

Anyway, when will I learn to just stop worrying?? The MRI was fine, stable compared to my scan from a year ago, which is fantastic. My neurologist wanted to see me ASAP because we needed to decide what the next steps will be and she is going out of town for 2 weeks and wanted to make sure we were on the same page before she leftt. It would have been nice for her nurse to tell me that over the phone, but oh well! =P

Unfortunately, when you're dealing with a rare disease, there are never easy answers...or any answers...and that's just life sometimes! Since all the testing we have done so far has come back relatively normal, we still have no explanations for my odd numbness patterns, coordination losses, and other miscellaneous neurological symptoms. We've done all the "easy" tests. To keep investigating these symptoms, we're looking at significantly more invasive testing and hoping that maybe those tests will give us some answers...but doing all that with the knowledge that those tests could STILL come back inconclusive since these symptoms could be simply mast cell driven...we just. don't. know.

So here's the plan: nothing. Yep, for someone who likes to know what's going on, this can be one of the most frustrating parts of living with a rare disease. My life is lived in a weird in between of wanting to do testing to figure out what's going on and wanting to avoid rough testing to avoid potentially triggering my nasty masties. For now, despite my on going neurological symptoms, we are going to play the wait-and-see game. Oh joy...my favorite...

Leni agrees...waiting is not our favorite...
Actually, I'm okay with this decision. Like I said before, we've done the easy testing. At this point, to keep testing means we have to do stuff that would likely set off my mast cells and could cause serious issues to my overall health/functioning. There is such a fine line to be walked when dealing with some of these little-understood conditions. The invasive testing is not off the table indefinitely. We decided to revisit things in 4 months. I'll have another full neurological evaluation and see if/how things have progressed in these next months. If things are progressing in that time, the risk/benefit of the invasive testing may have changed and we may need to reconsider. For now, though, my neurologist and I feel comfortable waiting it out and monitoring my symptoms for another few months. Of course, if anything comes up within this time frame, things could change, but for now, we're playing another round of hurry-up-and-wait! Another one of my favorites...

In other news, not much has been going on. After Florida, it's been a lot of recovering from all the travel, getting Xolair, catching up on my dissertation work, and now, prepping for our next trip! I got my next round of Xolair yesterday, and am currently in my post-Xolair recovery phase. That should clear up by Thursday (hopefully!) which is good because...Nick and I are heading out of town on Friday!!

Image result for photo of yosemite falls
Name that waterfall!
Image result for photo of alcatraz
Unfortunately we won't make it here, but it's close to where we will be...any guesses??
I'll hold off on spilling critical details to keep you in suspense, but don't worry, I'll spill the beans in a couple of days! =) (Photos are a not-so-subtle hint!) I'll just say that we are very excited and have been looking forward to this since we started planning and saving last year (yes, this has been in the works for over a year...what can I say, I'm a planner =P). We didn't take a honeymoon after our wedding, so this will be our first time traveling just the two of us (plus Leni) that's not to a doctor or hospital. Hope we've reached the proper adulting status to actually be able to handle this?!?!

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