Back to The Drawing Board

I have been avoiding writing an update for a couple weeks now. Last week was quite possibly the most emotional one I've had in this journey so far, and I'm only just starting to recover.

I met with my neurologist on Monday, to recap after my reaction to the Tysabri and my stay in the hospital. To sum up the meeting, we are now back to the drawing board with everything. I am looking for a new doctor, we are chasing a mystery diagnosis, we are trying a just-in-case treatment, we are ordering some tests...ugh. My doc isn't confident we have the right diagnosis, and every plan we have made up until this point has been tossed out the window. He is referring me to mayo clinic for a second opinion, and he is hoping a doc there can help us solve this puzzle. He all but quit my case, telling me that he still stands by the reasons he originally thought this was MS, but saying that nothing about this has progressed like MS at all. He said there are too many puzzle pieces that he doesn't know how to make sense of, and feels very strongly that I need a fresh set of eyes on my case.

I deeply respect his honesty, but I also feel completely lost and defeated. This feels like a cruel, never-ending labyrinth. I am so weary of all the uncertainty. I don't even care what the answers are anymore, I just want answers. And now I feel like I am facing this alone. I am sure there is a doctor out there somewhere who can make sense of this, but parting ways with Dr. Okuda is one of the most frightening things that could happen. He has been my champion, my constant voice of reason, the creator of all my strategies. Dozens of crazy symptoms could crop up, and I could stay steady because I knew our plan, and I knew our backup plan. And I knew that he would talk straight with me, tell me when something was a problem, tell me if he didn't know something, tell me if it was time to abort the plan. I guess that day has come.

The biggest mysteries at this point are that my lesions have been enhancing for a year (MS lesions typically stop enhancing after 6-8 weeks) and my lesions have failed to respond to every treatment we have tried. It's not to say we are facing the worst case scenario. It's just to say that nothing is a guarantee. All options are on the table, as far as a diagnosis. I am soooooo ready for this nightmare to be over. And instead, it's starting over. It's like someone just hit rewind, and the whole thing is about to play again. I just can't believe it. It's been a year, and we are standing back at square one. Strangely, today marks the one-year anniversary of my original square one. My first MRI, my first day in the hospital...it all happened on October 31st. It is so ironic, it hurts.

I have never prayed harder in my life. I just want this insanity to end. I'm taking a little break from being brave for awhile. As my friend Tara Schlappi Bodrero and her family say, I'm taking a "brave break."  It's been awhile since I've had one of those, and I think it's long overdue. Still praying, still hoping, still walking forward, but I can't promise to be brave. Not for awhile anyways ;) 

Thanks to everyone for your thoughts and prayers. I need them.

Halloween!!

Last Halloween was by far the scariest of my life!!! First full day in the hospital, first MRI with frightening results, 30 vial vampire blood draw...couldn't have planned a better scare!! I can't believe it's been a year!!

Home from the Hospital

Things kept getting worse, and I landed in the hospital for a few days, feeling horribly sick, and my head pressure/fuzziness completely out of control. We found some meds that helped, and I'm resting at home now. My doc says he doesn't think Tysabri is an option after this, which leaves us nearly out of options. I have a meeting with him on Monday to try and decide on a new plan. Honestly, I am so frustrated with all of this, that I'm ready to just do nothing for awhile and see what happens.

My neurologist wants to send me to mayo clinic or somewhere else for a second opinion. I'm really grateful my doc is honest about the fact that we've sort of hit a dead end here, but it leaves me back at square one, searching for a neurologist who knows how to handle my case. It's a familiar-feeling nightmare! They have already sent the referral over to Mayo, but honestly, I had a really bad experience there last December, so I'm pretty nervous about it. In fact, the worst experience I had in trying to find a doctor was at Mayo. I'd really like to find somewhere else, but most docs won't have the slightest clue what to do with my case. I've been trying to do some research into other options, but so far I'm not having any luck.

In the past couple months I have met a handful of friends online who also have Tumefactive MS. Some of them are actually on chemotherapy, which we have discussed as a last resort treatment for me. I just don't know if I want to hit this so aggressively when we are not confident of the diagnosis....And the only way to be confident is to wait for some insane, telling symptom, or to do a biopsy, which could paralyze something. What would anyone do in this situation? It's an impossible spot to be in.

Looking forward to the strategy meeting on Monday, although ultimately, next steps are going to be my choice, and I have no idea what is best.... Praying for answers. Hopefully clear ones!