Tuesday was a really big day for me. I had my second appointment with the rheumatology specialist at Jefferson University Hospital, and my first appointment with the head of the neurology department at Jefferson Neuroscience.
My doctors here are awesome, and doing the best they can with the resources they have. The science and equipment available at Philly to help is remarkable though, and offers fresh hope for me. I'm so glad all the doctors are on board with working together and understanding. I was originally worried someone would wind up butthurt because I was seeking another opinion. It's thankfully not the case at all though.
I'm really glad we left as early as we did because commuter traffic at that time was terrible. It took almost three hours, double what it should. We got there literally just in time for my first appointment. This was my third trip there so figuring out parking and where I was going wasn't nearly as time consuming. I'm starting to get the lay of the land. We had to check in and get security badges made up. The guy who did ours butchered Chris', but I'm sort of glad he did because it added some humor to the entire day. The black & white copy of his license photo looks like a terrible serial killer mugshot. Plus, I don't even know how to explain what happened to his last name. So, we have an alias now if we ever decide to go all Bonnie & Clyde if I become terminal or something. The Arcob's causing mayhem abound! I mean fine, there wouldn't be much point of an alias if I went terminal, but it was the star of some pretty imaginative scenarios and good laughs. Humor and a positive attitude is a powerful thing. Never underestimate it.
My first appointment was the neurology one. The entire appointment was unreal. It was exactly how you'd expect an appointment with something as serious as brain damage to go, but something I've never experienced. Technologies not available to us here yet. Once we were checked in a medical assistant took us back and took my vitals. Some serious vitals. It was a good twenty minute process. She even measured my balance & gait! I had to walk the length of a hallway on this mat full of sensors. It uploaded my steps onto a computer that measures your balance, weight distribution, stride, etc. They can monitor how your gait changes that way with time to see if you're progressing or getting better! It was really cool. I know, I know. The weird things that excite you when you're sick.
After that we got taken to an exam room where we met my nurse practitioner. My doctor has two practitioners that work with him constantly and I was assigned one that will be my treatment advocate is the best way I can think of to explain it. She hung out with me for awhile and took down my entire history since I started having MS problems, went over medications, pulled up labs and MRIs, and talked about what I was hoping to accomplish. She did a thorough neuro exam. I didn't do bad on most of it, but I tanked some spatial awareness tests. When the doctor came in she presented all of it to him for me, made sure she didn't miss anything, and then sat in for the entire appointment. When the doctor left she hung out with me for awhile still and made sure I understood everything he said, didn't have any unanswered questions, and knew what I needed to accomplish next. When I call for anything she'll always be the person I deal with, so I never need to worry that I'm talking to someone that has no clue what's going on. I really really like how they do things.
The doctor's really cool. He reminds me a lot of my neurologist at home, Kolva. He's this stocky unkempt Russian guy, with a deep accent and a unique sense of humor. Not only is he the head of neurology at Jefferson, but he's an immunologist as well. He's fascinated that my immune system pretty much attacks everything. While I have brain damage consistent with MS, I also have some aggressive atypical damage which has him concerned about a rare severe type of systemic or CNS vasculitis coming from my RA. And could be why I'm progressing even while on proper MS treatment. It's pretty much still your immune system being a dickhole and fucking up your brain, just for a different reason. A reason they know how to stop.
Interestingly enough, severe vasculitis is treated with chemotherapies like Rituxan. Rituxan was the treatment that made me feel the best so far, but I had severe reactions to it so they wouldn't let me stay on it. Reactions that could have been the result of massive cytokine death because it was working that well. I really think this dude might be on to something. Which is everything I've been praying to the universe for with going to Jefferson.
It could be that I have damage to my brain that they know how to stop. Damage that's currently unchecked because I could be taking the entirely wrong medication, aimed at the wrong part of my immune system. A super rare CNS vasculitis further complicating everything else I have going on.
Could be.
I have a ton of tests to get done. A buttload of work on my hands, but it could mean answers. It could mean getting better. It was a conversation a doctor hasn't had with me in a long time, and one of the main highlights of my trip to Philly. I could actually still get better. It's something I haven't thought about in a long time. I've just been trying to not get worse. Hope is a dangerous thing to hand someone, but it's something I desperately needed.
I have stacks of paperwork, prescriptions, labs, and tests to deal with. Most of which need to be done in Philly, and scheduled as efficiently as possible. It's not easy needing all of these tests and appointments so far from home, but totally worth it.
Chris doesn't want me to get my hopes up too high. It's really rare. It's also really dangerous (it can be fatal for tons of reasons, unchecked continuous brain damage, BLOOD CLOTS *cough*), but it's fucking treatable. You can read about it here if you'd like.
My mind is blown. No one's ever talked to me about this. I guess because it's that rare. I had no idea there was anything besides MS that could cause such severe brain damage. Going to Jefferson has beyond exceeded my hopes. I kind of want to make an appointment with my PCP just to give her a hug for making me go and rattle on about this exciting theory.
Every ounce of me wants to run with it and start treatment now. I want it to be right, I want to get better. But, it might not be the case. I need to do my due diligence and wait and see. The most pain staking part of being sick. Waiting for the tests, waiting for someone else to piece the puzzle together and shout 'Eureka!'.
Another awesome aspect of this angle is that it would open up a universe of treatment options for my RA. Which brings me to my next appointment!
After Dr. Leist blew my mind we went back to the car to regroup. My neurology appointment had taken about three hours. We had a little under two hours left until it was time for my rheumatology appointment across the street. Chris wanted to nap in the car because we hardly got any sleep. I attempted, but I was way to excited and full of questions and theories. I fidgeted around organizing paperwork and lab results, cleaning the car. I'm a nervous cleaner, and ruined Chris' hopes of a nap.
He wandered out with me to find a bathroom and hit up the food truck I've been dying to try the past two times we were there. They had an awesome chicken and rice platter for five bucks. Everything about being ServSafe certified and immunosuppressed says that food trucks are a terrible idea, but I like to live dangerously. Plus, steroids. I was not disappointed. By the time I was done nomming it was time to go see the rheumatologist.
She confirmed what I already knew, that I most definitely do have rheumatoid arthritis. I don't know if my damaged brain could have handled one more potentially life-changing differential diagnosis. She was fascinated by the neurologist's theory of systemic vasculitis resulting from my RA and eager to discuss it with him. She said I also most definitely have severe fibromyalgia. She added neurontin onto my list of crap I'm supposed to take, but after personally researching the side effects and what not I'm not sure of the risk versus reward yet.
Our main topic of conversation was steroids. I want completely off of them. She fears I may have developed Secondary Addison's from long term use and wants to get me down to 2.5mgs a day for now just in case. It's going to suck. The steroids are a gigantic band-aid right now. But it's a band-aid causing a whole other plethora of problems such as Cushing's syndrome. Ripping the band-aid off no matter how slowly is going to make everything flare that isn't under control. I want off, and they want to see what happens when I'm off. They're committed to fixing whatever happens, but until they can figure out how it's going to suck asshole.
We talked about lifestyle changes Chris and I have been making. We're trying to live healthier to create a better foundation over all. One of those big changes is how we eat and snack. We've cut out a lot of processed foods, and snack primarily on yogurt now. Yogurt is great for me on a probiotic level, plus some of the proteins in yogurt will help me get rid of the Cushing's syndrome. And, it's a healthy delicious snack.
Just look at our fridge, that's a lot of yogurt! I think we have pretty much every flavor in creation.
A fact that surprised both myself and my doctors is that I lost over thirty pounds since last year despite my heavy steroid use. I knew I lost some weight, but I didn't think it was that much. It makes them and me that much more optimistic that the weights going to shed off when I drop the 'roids.
Also on the aspect of lifestyle changes, the neurologist would like me to attempt to afford a Luminosity subscription to help with my cognitive function, and my rheumatologist wants me to take up an at-home yoga or Tai-Chi. I'll be stalking +Tara Gregory's stuff to figure out my own fat-kid yoga routine. Maybe I can even get +Chris Archeval to give it a go with me. While they'd prefer I go to physical therapy or legit classes it's not feasible. We have very open and honest communication because I need results and real manageable changes. Physical therapy and classes are exorbitantly expensive, and we can't afford it. Plus there's the transportation issue. Figuring out an at-home routine is a compromise I can manage that will yield results. Patients are quick to agree to treatment options that are not lifestyle compatible just to make their doctor happy and it results in failure on all ends.
If only I was as flexible as my adorable bastard of a cat whose chilling with me while I blog.
Daisy and Chris are still in bed in a coma practically. It was a long day in Philly, and took us about two hours to get home. We went to bed around eight. We were that tired. We got up around 1am for about two hours and ate something, and went back to bed. Chris is still sleeping like ten hours later.
My grandparents surprised us and got some stuff done around our house for us while we were gone. While I've been big on being independent with upkeep and projects for numerous reasons, it was a nice break. Plus she actually didn't hide half of my shit for a change. Open, honest, and respectful communication is a beautiful thing.
It's time for me to wake my husband, as we have much to do yet before the world shuts down for the day. He's still fighting off this damn campylobactor infection which is trying to ruin our lives. I wish that was the least bit dramatic. I still need to get tested for it too. Phone calls to doctors and the health department must be made, I have my pile of amazingness to dig into for Jefferson, and all of my local doctors to update.
Life is about to get a bit crazy for me for awhile, and I'm going to be in a world of hurt and suck in the very near future. For a change though, there's a tiny light at the end of the tunnel. Or is it just the beginning?
I dropped to 10mgs, my lowest tolerance on Monday, and by Wednesday I could feel everything start to flare up. My entire existence hurts. I emailed my doctor and let her know that things were flaring up already and she messaged me back that she put in a standing lab order to evaluate my inflammation markers that she'd like me to get done weekly before our Monday follow-ups on my taper. I got it done today in hopes that she'd have it in time for our appointment Monday morning. Within a few hours she emailed me, lab results were back already. My inflammation markers almost doubled within a few days. Higher than they've tested in months. I expressed that not only was I not kidding about feeling like shit already, but that I was quite serious about not being able to get under 10mgs of Prednisone. While she said she didn't doubt me (she yells at me for under exaggerating), having the frequent labs to track the process for Jefferson makes it even better.
