Mayo Clinic Update, May 2013

Just wanted to check in with a quick update. I've been making steady progress with my health over the past six months, and life has been pretty great! It's been so much fun spending more time with friends and family, and I recently started working part time for one of my favorite advertising agencies! I'm still loving my Mayo doc, which is such a blessing! I recently had a new MRI and a follow up appointment with Mayo Clinic, so wanted to share some quick updates.

MRI Results and Diagnosis Discussion

As for the MRI results, my brain lesion is stable, which is great! It hasn't grown, but strangely, it also hasn't shrunk, and it continues to enhance brightly. Docs say that the fact that it is still enhancing means it could not be MS. Obviously that is GREAT news, but still leaves us without any clear answers.

My neurologist feels pretty certain that the lesion in my brain and the spots in my lungs are connected…she said it would just be too strange for an otherwise healthy young person to suddenly have an unexplainable brain lesion and unexplainable lung spots. It's definitely possible that they are not connected, and it's possible that whatever is in my brain will never cause problems again, but there isn't any way to know for sure without a diagnosis.The diseases that might connect a brain lesion and lung spots are mostly granulomatous diseases. Those can actually be ok as far as prognosis and recovery go. Or they can be pretty rough, with a diagnosis like lymphomatoid granulomatosis, which is one that they are considering. My docs are very optimistic, given all the progress I've made, but they feel its important to pursue the diagnosis since the brain lesion and lung spots are still there, and since I am still not as healthy as I should be.

Next Steps

My neurologists are ordering a full body PET scan to find out if there are lesions anywhere else in my body. My doc said the PET scan will also give us a better look at how active my lung spots are, and will help us decide if a lung biopsy makes sense. Strangely, it seems that my docs are almost hoping we will find a lesion somewhere else that we could biopsy. It's crazy when situations like this come up....we are hoping for a lesion in another organ?? It makes no sense. And yet it does. My brain lesion continues to be a very dangerous option because of the location, and lung biopsies are rarely effective. I've never had a PET scan before, so it will be interesting to see if that shows us anything new.

How I'm Doing

My overall progress is extremely encouraging, even with some minor setbacks in recent weeks. I am still battling with my energy levels, fighting to keep clear thoughts by the end of the day and the end of the week, and struggling to keep up with my part-time schedule at work. But overall, if I look at where I am today, I am 100 times better than I was six months ago, and a thousand times better than I was a year ago! So I have to keep things in perspective, and realize that I have a lot to be grateful for, and that things are going to continue to get better and better! As always, the Lord has been very good to me. So many good things, and great people have come into my life these past six months. I am always in awe at how well the Lord knows me on a personal level, and how he reaches out to me in such personal and meaningful ways. 

Thanks to everyone for all of your prayers, and for so often reaching out to see how I'm doing. It honestly means so much, and helps me to know that whatever comes, I'm never alone in any of this. I am completely amazed when I consider all that my friends and family have done for me over these past two years. Thank you with all my heart to everyone who has loved and supported and served me!

I'll post more updates as I have them. It will be sooner than six months this time, I promise! ;)

Mandy