2014 Updates: Biopsy and Breaking Records

Just wanted to write a quick update, more for myself than anything, but also for those who have been asking me to write something for months.

Overall, life is good and I have very few complaints. It's hard to know how to sum up everything that has happened in the past two years, and I guess this blog can sort of speak for itself. It's been a crazy ride, an emotional and physical trial that is unparalleled in my life. I have experienced more types of pain through this journey than I ever conceived was possible. There is no way to describe what you go through when trying to cope with the various stages of relapse and recovery. Even the ups are challenging, because for me, they are almost inevitably followed by downs. And that makes it a little scary. But I've learned more than anything to live in the moment, to love and appreciate every single day of life, and to let hard times pass through my life without bringing me down. I've learned so much in such a short time, and in many ways I am grateful for that.

THE UPDATE

Honestly, I would say I'm extremely happy right now, and I am so much healthier than I was two years ago. Sooo much healthier, and that is exciting and encouraging. My brain lesion has been stable and unchanged for over a year, and doctors even wonder if that is what's responsible for my illness. Maybe it's not. I continue to be sick on a fairly regular basis, but it's alot of non-specific symptoms like muscle weakness, extreme fatigue, and that inescapable brain fog. It comes in waves, and often I'm feeling great, then sick, then great, it's all so unpredictable and makes it hard to progress with my life, my career, my social life, goals, dating, really anything.

I have an appointment with the Mayo Clinic for follow up next month. My most recent MRI was in December, and everything looked good there. We are currently looking into a mass that we found in my anterior mediastinum (in my chest, right behind my sternum). We aren't really sure what it is, and hopefully it's nothing, but we are doing a biopsy next week to be sure. I have honestly been checked out of the mystery-solving business for most of the past year, because we were turning up more questions than answers, and it was making me crazy! So, I decided to just enjoy the good days and weeks and focus on controlling my health in every way I could...eating organic and healthy, keeping up with strength training, keeping on schedule with my supplements and medications, doing as much as I could to organize my life, and spending my good days with the people who are important to me. It's been really good for me, and I've loved focusing on normal life in the ways that I can.

In tuning out the medical world, my doctors appointments and even my sick days and weeks have come to feel pretty routine to me. But there isn't really anything routine about a biopsy, so it's shaking things up a little. I know I'll be fine, its just pulling me back into this medical reality for a minute, and it's kind of unsettling. But honestly, I do want to know what that stupid mass is, and even for the slight chance that this could give us some sort of useful answers...(I hate hoping for things like that)...I guess it'll be worth the stress and pain.

The mass is behind my sternum, so a CT scan guided needle will be stuck through my ribs, pass through part of my lungs and then reach the mass to take a sample. They say the biggest risk is of deflating a lung, otherwise it's pretty safe. A deflated lung. No big deal. Basically safe.

BREAKING RECORDS

Hahah, I'm really excited about my recent health though. The longest I have ever consecutively felt healthy in the past two years has been two months. I am REALLY excited to say that I am currently in uncharted territory now, breaking my record every day!! Mid-December I started improving again, the very end of December was great, nearly all of January was great, and it's now heading into late February, and other than a silly virus I've just caught, I'm still feeling great! Some part of me is just holding my breath, walking on egg shells, hoping to not disturb anything. And the other part of me is CELEBRATING, ready to fight back at any sign of weakness, ready to call on everything I've learned in the past two years about fighting for my health, and not accept any form of defeat. I know I deserve this, I deserve to get my life back on track, I deserve to be healthy and whole, and I deserve to hit three months, six months, twelve months, and even forever of being healthy. Whatever comes, I will be grateful, but I have to admit, I'm really hoping this is the home stretch, and that I can continue to improve each month until I'm living a truly healthy life and can leave all the doctors and tests and setbacks behind forever. It's been a beautiful two months, and looking forward to all that the future brings!

Praise God for blessing me and helping me in every step of this journey. I am truly grateful for every day of life, every step I am able to take, every trip up the stairs, and every chance to see and interact with the people I love. Every day of life is a gift, I hope I never forget that.

Mandy

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

Mayo Clinic Update

The past few weeks have be so great! I've felt more like myself than I have in a year! I've had more energy, clearer thoughts, stronger muscles, a stronger immune system! I have been loving every minute. I've been spending 2-3 hours with my physical therapists three times a week, and I am making so much progress!! I can actually see my muscle growth, and its helping me get through every day!! I'm crossing my fingers that this improvement lasts...or maybe that it sticks around forever?! It's been so much fun for me, I don't think I have ever appreciated life as much as I do now. I walk up the stairs without pausing for a break, and it feels so great, it just makes me happy. And then I get to the end of the day and I'm still just standing around doing things....happy again! I can't believe how much I love every day and every minute, and how much I appreciate the smallest things. I hope I can always keep this perspective! And I also hope that I can always keep this strength! Either way though, I will always be grateful for these days. I have no idea where this medical craziness will go in the coming years, so I am promising myself that I will do all I can to appreciate each day, treasure every hour with friends and family, and make the most of every situation, no matter how I'm feeling.

Mayo Clinic
Last week I had a strategy call with Mayo Clinic. I was really grateful, because Dr. Cortez, the resident (who i learned is actually a fellow, with 4 years of neurology experience), took so much time to answer my questions and explain things to me. She is very smart about my case, and seems to know almost as much as I know about my history, which is impressive! She isn't afraid to consider my ideas or my questions, or to discuss things openly with me. I absolutely love that, and I am so happy to be working with her.

She said that she and Dr. Wingerchuk have spent time reviewing my case, looking at my scans, getting radiologists input, etc. She said that the first question they want to answer is whether or not the spots in my lungs are related to the lesion in my brain. She said of course its possible they're not related, but that it is a very important question to answer, and they want to explore that first. She mentioned the possibility of a lung biopsy, but said they first want to see the CT scans of my lungs, along with the radiologist reports and the doctor's notes from my pulmonologist. They will have their radiologists review the scans, and decide if they think we need to pursue this further. If the lungs spots are related to the brain lesion, that would most likely be neurosarcoidosis.

I asked her if they definitely think the brain lesion is related to all of my symptoms, or if it was possible that there are two different things going on. She said its definitely possible there are two different things going on, and even possible to have two different rare things going on. But she said it is much more likely to be one thing, so for right now, they are trying to be open to the possibility of one condition that is very atypical.

We discussed the original myasthenia gravis antibodies that Mayo clinic found last year. One of them is a striated muscle antibody and one is a muscle modulating antibody, which were both positive. I asked her if that could mean nothing; if it was a false positive like the false mono, rocky mountain spotted fever, and typhus antibodies that kept turning up for me. She said that she thinks they definitely mean something, but they aren't sure what. It isn't myasthenia gravis, because the EMG (muscle test) was normal. But these are neuromuscular antibodies that turned up and the same time I was having extreme neuromuscular symptoms. She thinks they are definitely related, but we don't know exactly what is causing those antibodies. It's possible that those antibodies are not currently active (they turned up positive last year when I couldn't walk) and its possible that the EMG would have been abnormal if they would have done it back then. She said that if I ever have a relapse of severe muscle weakness, they will repeat all of these tests to try and get to the bottom of this. She said if those antibodies were currently positive and if I were still having severe neuromuscular symptoms, we would treat it with chemotherapy to try knocking out those antibodies. But for now we just wait, and hope this never comes up again.

Diagnosis?
Mayo Clinic is the number one producer of research on Tumefactive Multiple Sclerosis, and Dr. Wingerchuk is one of two MS specialist neurologists at Mayo Clinic Scottsdale. So I was really interested to hear what they had to say about my diagnosis and the possibility of Tumefactive MS.

Dr. Cortez said that Dr. Wingerchuk is "hesitant to call this MS anything" because of how long my brain lesion has been enhancing (over a year now) and the fact that it hasn't shrunk or responded to any treatments. I asked her what they do think it is, and she said the first thing they are considering is granulomatous disease, most likely to be neurosarcoidosis. The second thing they are considering is a low grade glioma, which is a slow growing tumor. She said that our first order of business is to chase the lung spots and see what we can come up with to prove or disprove neurosarcoidosis. The next thing would be to repeat my MR spectroscopy, which was inconclusive the first time we ran it. The spectroscopy measures the chemical makeup, etc in the brain tissue and usually gives clues about whether or not a lesion is a tumor or MS. Mine told us absolutely nothing, and she said the hope is that they could produce a more accurate result since it's been a year of the lesion being active in my brain.

She said that Tumefactive MS and vascular lesion are both still possible, but they are looking highly unlikely. The mayo radiologists looked at all the scans from MD Anderson, including the vascular scans, and they disagree with the idea of a vascular lesion. They did agree that it looks like a Tumefactive MS lesion, but the neurologists say that's nearly impossible when you look at the scans from one year ago until now. This is either an extremely rare presentation of an extremely rare disease, or it's not Tumefactive MS. But this would also be atypical for neurosarcoid or a glioma/tumor.....so either way, we are chasing something extremely unusual.

I am trying to keep an emotional distance from all of these possible diagnoses. This has been such a long process with so many diagnoses suggested and then retracted. I can't worry about the possible diagnoses, because they are all different, and I don't know which one to worry about! Lol. For now, I am just loving how I feel and the progress I am making each day! I am so grateful and relieved to feel more like myself and have loved having the energy to see my friends and family more often. I also just got approved to work ten hours a week and I'm really excited about it! I don't know what kind of job I can find for ten hours....but even the approval is a sign of progress, and I'll take it!!!

Hope everyone had a wonderful Christmas! I actually had soooo much fun this year. Possibly my best Christmas ever. I'll try to post a few pics and tell more about this later! :)

Thanks to everyone for your support and prayers!

Mandy