New Diagnosis Suggestion

Last week I met with an internist from MD Anderson. He is just an internist, but he has access to the neuro-radiologists who specialize in looking at Tumors and Lymphoma. The doctor wasn't especially helpful or hopeful that he could help solve anything, but he did have the radiologist look at my scans and give an opinion. The radiologist says he doesn't think it looks like a tumor or a lymphoma. Or MS. That is potentially GREAT news, but it is also very confusing.

From day one, every doctor and every radiologist has had a different opinion about this; some of them are confident it looks like MS, some emphatically say it's not MS, one radiologist says it looks most like lymphoma, the hospital docs wanted to do a biopsy because they thought it looked more like cancer than MS...so confusing as the patient! Obviously, whatever it is, its unusual. I feel like I have to be the doctor, I have to decide who is right and how to proceed, and it's very overwhelming.

The good news is that the radiologist did have a recommendation for a possible diagnosis we can look into. He wants to look for a vascular malformation, like an AVM (arteriovascular malformation). An AVM is a "tangle" or mass of abnormal blood vessels in the brain. AVMs occur in less than 1% of people. It is often treated with surgery, embolization, or Gamma Knife (radiosurgery). For anyone who wants to know more about AVM, you can google it, or you can look at one of these links: http://neurosurgery.ucla.edu/body.cfm?id=110 or http://www.irsa.org/avms.html If this is what it is, it would be challenging because it is in the motor strip, and surgery or gamma knife, or embolization would likely be impossible. I'm not sure. They have a scale for grading these vascular "tumors" and depending on the grade, they may not have to treat at all. More details about that are included in the links above.

Although an AVM isn't simple, it was an interesting experience for someone to even suggest something like this. From day one, I have been told this was most likely the type of disease that would change my life forever, or possibly take my life. Now here is a doctor suggesting a disease that isn't progressively debilitating and recurring like MS, and isn't usually life-threatening like a lymphoma or a tumor. I didn't even know how to take that at first, and as I continued to process what I was feeling, I realized that this is the first time I have been given any reason to hope that there might be a way out of this. What a sweet, unexpected, liberating feeling. I realize it could be dangerous and disappointing to hope for a thing like this, but honestly, every emotion in the past year has been the unfounded result of sheer speculation. So when for once, the speculation is a hopeful one, why not grab onto it and feel it for as long as possible?! It may be ripped away as quickly as it was given, but this honestly feels like a speck of warm sunshine creeping into the arctic. It is the first time i have been allowed to consider something hopeful, and it's a relief to feel that, even if it's temporary. Nobody has ever offered me a possibility that had a happy ending. So for today, I am hoping. Truly hoping. Not just for a less-than-tragic outcome, but truly for a happy and healthy outcome.

Tomorrow I have a special type of MRI to look for a vascular malformation like this. Reasons it is unlikely include the fact that I have oligoclonal bands in my spinal fluid, the fact that I have had an unremarkable venogram in the past, and the fact that I have been sick for a year. But whatever this is, it's unusual. So why not be an unusual AMV? I'm crossing my fingers.

I won't get results of this MRI until next Monday (November 12th), when I meet with the internist again. I'll be sure to give an update. Still looking into options for a new doctor to follow my case. If this AVM things turns out to be right, that would make things 1,000 times simpler. I think....  ;)

Mandy

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.