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