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