MRI Results

I got an update from the neurosurgeon at Barrow's. They reviewed my recent MRI and it looks like that dumb lesion is growing. They said we will continue with the neurological workup, and if we do everything we can and are still left empty handed, I will be going back to the neurosurgeon for a consult on a biopsy. Because it is growing, we need to know what it is so we can be treating it.

I told my mom I must be living in some sort of alternate world, because my first thoughts when I heard this news were:

1. I was thrilled that I had read the MRI correctly! (thrilled?! What is wrong with me?? Lol) I was trying to play neurologist and decipher that MRI for myself, and I kept saying I thought it looked like it was growing on a certain view, and that is the exact view the doctor referenced when giving me the news! I think I am looking at this from a very academic perspective because it's the safest place to be. All the medical ins and outs fascinate me, and academically, it was really exciting that I cracked the code on my own MRI!

2. I was honestly relieved that there was some change. For the past two months, docs have been telling me we just have to "wait". Wait for the next MRI, wait to see what that lesion does, wait for any further clues, wait for a diagnosis...so if they had called me and said everything was still the same and we needed to "wait" some more, I would have been disappointed.

3. It wasn't until after talking with the doctor that I was suddenly thinking...wait a minute, a growing lesion is probably the worst news of all. And then I was a little bummed. But honestly, once we figure out what's going on, we can start treating it, and that will be the biggest relief of all.

We have had people ask what to specifically pray for. At this point, what we need is for the docs to be able to sort this out without needing a biopsy. The reason we haven't done one yet is that the lesion is growing in my motor strip. Docs keep telling me that we want to avoid a biopsy there at all cost, because even a needle biopsy in the motor strip could paralyze something. Any and all prayers for my doctors, that they will know how to solve this without a biopsy, would be greatly appreciated.

I have another appointment with a Barrow's neurologist (we were referred there by the neurosurgeon) on February 8th. That doc is going to help us do some more digging and make a plan. Hopefully I will know more after that appointment. I'll post any updates as I have them.

Thanks all for the love and prayers.

Mandy

Still loving this song: http://www.youtube.com/watch?v=SGniRk_GcLs 

Hooray for a helpful doctor!!

So as it turns out, the PCP i went to see is awesome! He is going to follow my case, and said he will spend 2-3 hours reading my entire medical report from the past few months, and he will make a list of to-dos and priorities. He will meet with me every couple weeks until we have everything sorted out. He is going to help me determine which specialists I need to see in addition to the neurologist. It a huge relief to have a helpful doctor who isn't afraid to take on a challenge. He will help us coordinate and keep track of things from a medical standpoint, and that is exactly what I need! I still have that appointment with the Barrow's neurologist in February, and I am hoping that it goes well and that it will lead to some answers. I will have my next MRI in the next couple weeks, and I will bring it to my February appointment. Hopefully the MRI will tell us something about that lesion.

I have been feeling better this week except for some crazy dizziness yesterday. It's been several weeks since the last time, so i was surprised when it took me completely out of play for awhile. It's always a strange feeling lying on the bed, feeling like you are on some sort of circus ride gone wrong.

Good news though, I am almost one week free of any flu! I had started to wonder if i was a walking virus incubator there for awhile, but it seems that I have broken free of that pattern...at least for awhile! Physical therapy is also going well, and we've been trying out some new things, including balancing on the trampoline! It's one of the best ways to focus on my stabilizing muscles, and I really have noticed a difference. Tomorrow we are going to try playing Wii Sport games for therapy! Back in the rehab center, most of the patients got to play Wii games and I was always super jealous! Therapy with the Wii is meant to help with balance and stability and since i couldn't even stand back then, it wouldn't have helped me. Now I feel like I have really arrived at some sort of destination....I finally qualify to play Wii!! Haha.

Last weekend i had a few friends over and it felt really great to remember a bit of my life outside of this drama. For awhile i sort of felt like myself! I will be really glad when all of this is behind me and i feel like myself every day. For now, I am just grateful for daily progress.

xoxo
Mandy

Pic: Living on the Edge

Pic: Physical Therapy: Trying to decide if this is a good idea!

Update...

A quick update for those who have been asking. Sorry for the delay!

Being home for my birthday and Christmas was definitely a blessing! Thanks to everyone who did so much to make my birthday memorable and amazing! I have never felt so loved.

Since getting out of the hospital, I've been doing physical therapy three times a  week. I'm getting better and stronger every day. My muscle strength is getting closer to normal, but the muscles still don't quite coordinate together, which makes balancing and walking motions a challenge. Also, my knees periodically like to give out on me. When I left rehab, they fitted me with some knee braces that really help stabilize my legs. They make my legs look like they have artificial powers...like iron man or something!! I am hoping I will be ready to go back to work in February, but at this point I honestly can't say. I am still working really hard to regain my ability to walk. I have a wheelchair, a walker, and crutches, but the only thing I can safely use myself is the wheelchair. Not that I couldn't do my job from a wheelchair, but I really need to keep up with my physical therapy because walking again is reachable if I continue progressing the way I have been. As for how I'm feeling, it definitely is great to be at home. Just the chance to see my family every day, to open the door and breathe fresh air, to sit on the floor and stretch whenever I want to...it's been amazing! Adapting to being at home was harder than I was expecting. I was really overwhelmed in the first several days, just trying to get around and do simple things, but that is getting better. Stupidly, I have had the flu three different times since leaving the hospital on December 8th. How is that even possible!? My body is still really struggling with immune response. Hoping that gets better because being sick so often isn't a good way to return to work, so we'll see how things go in the next month.

As for diagnosis, I have been undiagnosed with MS, then re-diagnosed, then undiagnosed. Haha. Nobody knows. In collecting all my medical records, I have the chance to read doctors notes and updates. Three of them have specifically written notes about this being "an extremely complicated case." I had one doctor tell me I am a "zebra in the zoo" and one doctor tell me i am a "duck that doesn't look like a duck or quack like a duck." To make things more complex, it actually is looking like a possibility that I have Myasthenia Gravis...mostly because I tested positive for it! But that doesn't explain the lesion in my head or the MS-related proteins in my spinal fluid. So it's actually possible I have both or that the MG tests are false positive for some reason. Who knows! I am trying to not worry about any of this for now because it is a circus that makes me feel like a mental patient at times!!

As for follow up, a really great friend referred me to one of the head neurosurgeons at Barrow's Neurological (thanks again Vanie!) We all knew he wouldn't be able to treat me long term since he is a surgeon, but his personal referral gives me priority status for getting into any other Barrow's neurologist. He made the referral and I am going to see a Barrow's neurologist in February (regular wait time was until June!!) So I am just going to focus on rehab until then and hopefully this doc can help me make a plan for long term follow up. I did get a referral to a great PCP who supposedly helps coordinate specialists and tests when it comes to complicated cases. We are going to have him order my next MRI and some of the labs we know the Barrow's doc will want to see. Hopefully that way we can make the most of our appointment in February.

Oh, and another important update....i have achieved a new favorite status with my nieces and nephews. Haha. They absolutely love sitting on my lap for rides in my wheelchair, or pushing me. I often have two of them riding with me a time because they can't wait for a turn. I absolutely love it! Sweet Garner (7 years) interrogates me about my physical therapy every time I see him. I'm amazed at how much he understands and the specific questions he asks. It's so sweet. Micaela and Steve have both reported overhearing their kids playing doctor. Parker (5 yrs) said to Aisley (2 yrs) "Ok, I'm the doctor. You are in a wheelchair, but you're getting better and you're learning to walk." Hahah....I love it. These little kids are so precious! It's amazing the love and support you can feel from such young ones.

Thanks to everyone for your thoughts and prayers, it really has meant the world to me. I couldn't have made it this far without such great friends and family.

Lots of love,

Mandy