Barrow's Appointment: August 28th

I'm feeling a little heavy hearted this week. I have a friend in the hospital, a friend of a friend whose baby just drowned, a friend who just miscarried a baby, a close and important political campaign that was lost, and a close friend who is going through an excruciating breakup. It's times like this that really put life into sharp focus, and remind me of what's most important. I can't say how much I love the people in my life. My family, my friends...I don't know what I'd do without them. I wish there was more I could do to help with hard times like these. One thing I do know about life is that it's not easy. Big trials happen, and there is no easy way to get through them. But I also know that God is never far, and we are never truly alone, whatever we may be going through.

This week has also been tough because my family moved to a new house in a new town. For now I'm living with them, so that means a change for me too. It's been physically and emotionally exhausting on us all. Fortunately, the move brings us closer to my married siblings, and closer to my mom's work, so ultimately it will be a good thing.

This week's appointment at Barrow Neurology was important, and it was great to talk strategy with my neurologist. That always puts my mind to rest because I know there is a plan, even if there aren't answers. My neurologist said he is constantly "re-inventing" my case because there is nothing about it that has been predictable, nothing that fits in a textbook, and he wants to make sure we are not missing anything important, or working with the wrong diagnosis.

UNEXPLAINED CT SCAN

Because of the lung nodule that showed up on a recent X-ray, my pulmonologist ordered a CT scan of my chest to get a closer look. The CT scan showed "multiple spots" (greater than ten) on my lungs. My antibody test for valley fever came back negative, so my pulmonologist and my neurologist are confident these lung spots are not caused by valley fever. They both said there is a .01% chance that i could have valley fever that doesn't produce antibodies, but with odds like that, we are pulling it off the table. So the lung spots have no explanation. I will have another chest CT scan in three months to check for any changes. I asked my pulmonologist if he thought there was any way this could be connected to my bigger medical case, and he said that was a good question to ask my neurologist. So I did. The neurologist says the only thing he can think of that would connect my lung spots and brain lesion would be neuro sarcoidosis. But he said it isn't acting like that, so he highly doubts it is. His conclusion about the lung spots is that he has no explanation for them. He did say its possible they are granulomas from something I inhaled in the past, which would mean they are currently harmless. The follow up CT will hopefully make that more clear.

ANOTHER RANDOM DETAIL...

Another thing we have no explanation for is weight loss. In a matter of about six weeks, I lost fourteen pounds despite eating and resting regularly. Valley Fever would have explained this weight loss, but now we are saying I never had valley fever. My neurologist admits that this is another thing he has no explanation for. As frustrating as that sounds, I actually prefer his honesty.

BRAIN LESION DISCUSSION

As for the brain lesion, my doctor says there have not been any significant changes. It is still the same size, and still enhancing as strongly as it was when we first found it. What we thought was a slight improvement before, actually wasn't significant. The most important thing right now is still addressing and controlling this lesion. My neurologist said there are plenty of doctors, including the docs at St. Joe's, who would want to do a biopsy at this point. But we talked (again) through all the reasons we should wait. He said it doesn't look like neuro sarcoidosis because steroids would have dramatically improved the lesion, it doesn't look like lymphoma because steroids would have dramatically improved the lesion, and it doesn't look like a brain tumor because there is a second lesion (the chances of having two tumors at the same time are very small) and because neither of the two lesions have grown in the past few months. Overall, it's pretty clear that this isn't acting like any of those things. But then I asked the obvious question that we have discussed a million times. I said, "how likely is it that a tumefactive MS lesion would also fail to improve with steroids, not to mention plasma exchange?" He said that's why he has to keep reinventing this diagnosis and strategy. Because steroids should have improved an MS lesion too, and they haven't.

DIAGNOSIS DISCUSSION

Dr. Okuda (my neurologist) said he is still confident that this is Tumefactive MS. I asked if it could be another form of demyelinating disease, or another sub-type of MS. He made a joke about how he has given this question "a little bit of thought" in the past. Haha. I do know that he thinks about my case often and that he has considered it from every angle. He said that within the MS family and other demyelinating diseases, it is the size of my lesion that gives it away. He said this large size is the calling card of tumefactive MS. If it's a demyelination, or MS, he is confident it's Tumefactive MS.

STRATEGY DISCUSSION

I asked Dr. Okuda what the research says about lesions that enhance as long as mine. To his credit, he told me the truth. He said there isn't any research about lesions that enhance this long. He said that while investigating Tumefactive MS, he has found doctors who have seen this before, but it seems to be extremely unusual. He said that this scarcity isn't necessarily a fair read though, because many doctors treat these lesions with chemotherapy, which would stop the lesions from enhancing by shutting down the immune system and stopping the body from attacking it's own brain tissue. He said chemotherapy is something he is trying to protect me from. For now we are going to move forward with the Tysabri and pray that it works. Dr. Okuda is actually really hopeful, even confident that it will dramatically improve my brain lesion and my quality of life. I was glad to have this discussion because Tysabri seems so extreme and risky to me. But knowing that our next step could be chemotherapy makes me very grateful that we have something else we can try. I am also very grateful for a doctor who is doing everything he can to protect me in this uncertain battle. I honestly wouldn't trust these decisions to anyone but him. I think there are few doctors out there who could resist doing a biopsy or jumping to chemotherapy after so much time has passed without resolution. We do know there is a chance that we are completely wrong about the diagnosis, but we have enough reasons to be confident in our plan, that we are comfortable taking these precautions.

My first Tysabri treatment is this week on Wednesday. Dr. Okuda says we should know if it's working within about eight weeks. We'll continue with regular MRIs and hope that things start to improve! My next MRI is actually in a couple weeks, but that is just to keep an eye on things like usual. My November MRI should tell us if the Tysabri is working. Fingers crossed and praying that it does!

Thanks to everyone for reading my blog! I appreciate the emails and messages I get from several of you. It really does mean alot. I apologize for any that I may not have responded to. When I have a rough week, a million details get lost. But please know that I do read every message and it means alot! To those of you with Tumefactive MS, keep fighting the fight! It's often very confusing and overwhelming, but every day of life is worth the struggle. Message me when you need to talk. mandyclive@gmail.com

All my best,

Mandy