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

If this were a book, I wouldn't read it!

Man, I have never been such a slacker at writing an update! It would be one thing if I just simply forgot. But I didn't. I've literally been avoiding it every day since my last entry. It has been on several to-do lists, and I have come up with dozens and dozens of "important" reasons to put it off. Again. And again. Thank you to those who have emailed and texted to check in on me in the absence of an update.

A lot has happened, actually. I think I am just so frustrated with it all, that I don't want to face it intentionally. In the past, I've thought that my complex medical mysteries might make an interesting book one day. But now I'm to the point where I think this is the dumbest story I've ever heard, and I'm ready to be done with it. If this were a book, I'd toss it in the trash about now. And I'd tell everyone I know not to read it.

Anyways, for the sake of my own record keeping, my own journal, and to those of you who follow my blog and especially for those who have inquired about me recently, I am here to give an update. I hope. ;) You never know, something more pressing might come up before I finish this!! Lol!

THE UPDATE:

Barrows

For any who missed the earlier update, my Barrow's doc referred me to Mayo Clinic for a second opinion. He says that after a year of MS treatments, this brain lesion has done nothing to respond like an MS lesion, and he is doubting our diagnosis, and wants a second opinion. He basically un-diagnosed me with MS. That is FANTASTIC news, honestly! But....then what is it?? Honestly, we don't really know. All the usual culprits are on the table: Tumefactive MS, Lymphoma, Tumor, Neurosarcoidosis, now vascular lesion. There isn't any way to know for sure. Like I said, this is a very dumb story. It is repetitive, the plot never changes, the issues never get resolved. If this was a book, I wouldn't be reading. Congrats and thanks to those of you still reading. I honestly can't promise that this story is headed anywhere!! 


Mayo

l was really nervous to go to Mayo clinic, because I had a rough experience when I went there for an opinion back in December of last year. But my Barrow's doc told me this really was the best place for a second opinion, and he recommended that I give them another chance. I still can't say if I'm glad to be at Mayo, but at least my first appointment was bearable. They originally told me it would be a few months before they could fit me into the schedule, and I asked if there was any way to be seen earlier. They said if I agreed to let a resident participate in my case, I could be seen in a matter of weeks. The resident would see me as if I were her patient, and then the doctor would come in to see me too, and they would both work on my case together. I agreed, and actually felt lucky because two docs are better than one, and a teaching case often gets looked at more thoroughly. I was also lucky because the resident was very smart, attentive, caring, didn't critically grill me or try to second guess me. My meeting with her was agreeable and constructive, and she actually caught up on things very quickly and seemed to understand what is most important and most mysterious about my case. When the neurologist came in, his approach felt critical and distanced more than anything, but I know he is smart, and I'm grateful I get to have both of them looking at my case.

They didn't have a plan for me on the spot, because they wanted to look through my MRIs and the additional records that I brought. They wanted to talk to their radiologists about my MRIs to see what they think this might be. They also wanted to take time to consider the possibility of a biopsy. I clearly explained the reasons we haven't done this: the location is bad, the lesion isn't growing right now, and I'm getting better not worse. They agreed that all of this makes sense, but said that it is still an important consideration, and they need to discuss it. They did agree with my being off MS therapies for now, since we aren't certain what this is. When it comes to the possibility of a vascular lesion and the vascular MRIs, the resident said they need to take a closer look and officially decide "which camp they side with." The neurologist basically said he was glad I didn't presume to think they would agree with that idea. (His tone was even ruder than his words.) I honestly don't know what to make of docs like this. I feel like it doesn't matter how agreeable I try to be, I'm going to walk away feeling bad about the conversation. Praying hard that my heart can handle this, and most especially that this will bring some answers! They did order an EMG (muscle test) and we have a call later this week to talk about the strategy.

Physical Therapist

Back in September, my leg muscles started acting up again. I was ok walking, but things like rising from a seated position and climbing stairs became increasingly difficult. I thought it would pass, and to some degree it has, but I still feel pretty weak by the end of each day, and I am ready to be done with that nonsense!! So I started going back to my physical therapist to get some help identifying the problem muscles, and getting things back on track. I'm actually really excited about this. I am feeling more like myself this past month, and this takes me back to the days before getting sick, when I was going to the gym three times a week. Hey, regular gym, or physical therapy gym, it's practically the same, right?! Hahah...almost. My PT has given me three different lectures about not pushing too hard, and taking things at the prescribed pace. He's right, but I'm ready to just push through it all, and get back to my normal self. I'm actually loving the workouts and the chance to make more progress in my journey towards recovery.

CT Scan

Back in August, I had a chest CT scan done when I was horribly sick, and my PCP thought I had valley because of my weight loss, sickness, and a nodule on my x-ray. He sent me to a pulmonologist who ran a chest CT scan. The scan showed "multiple" spots in my right lung, and we weren't sure what it was. Follow up blood titers were negative for valley fever, so the neurologist and pulmonologist agreed that it was nearly impossible that had valley fever, and ruled that out. As for what they thought the spots were, they both were uncertain. So we planned a follow up CT scan for December. I just got results back, and it looks like half of those nodules have resolved, and half of them are still there, with the largest one measuring 5mm. There is also a separate 1cm triangular spot in my right lung that looks like atelectasis (scarring or blockage) but they aren't certain. As for the many resolving spots, the radiologists think this means it was something inflammatory or infectious. The pulmonologist...even in all my days of baffling docs, I've never seen one with so little to say. He doesn't have an explanation for what this is or isn't, even though I pressed him for a better explanation of his assessment. He just said that whatever it is, its resolving, which is good. He told me that means these likely aren't cancerous spots (He seemed very relieved...apparently he was worried about this??) But he still wouldn't attempt to guess at what it might be, or have been. He kept telling me I need to talk to my neurologist about this, and even gave me a copy of the report with his signature on it and told me to hand it to my neurologist. 

The CT report randomly mentions residual thymic tissue, and I asked the doc about that and why it was on the report. He said that that's one of the things he wants my neurologist to see. He said it could be related to something like myasthenia gravis, which ironically, is one of ten random things I test positive for. The report also mentions mild pericardial effusion (fluid on my heart), which also showed up on the previous CT scan.

The doctor ordered another CT scan for 8 months out to check on these spots, and especially that 1cm triangular spot, to make sure that there is nothing more serious. I'm hoping the unresolved nodules won't cause any problems, but glad they are going away. It is possible that some of the remaining spots are scars from the resolving chaos. 

I doubt this  lung complication is related to my bigger picture case (though its possible) but it could explain why I was so sick from July-September, and that's an answer in itself! I'll take all the answers I can get...even vague and non-specific ones!!

PCP

I recently had a meeting with my PCP to get him updated on everything that has been happening. I also needed him to run some tests to find out why my hair is falling out in handfuls!! In the past six weeks, I have literally lost almost half of my hair. Fortunately, I had a TON of hair to start with, so it's not noticeable, but it's been a really frightening experience. Hair loss is a side effect of Tysabri, and it is also the body's reaction to stressful experiences like my Tysabri reaction, or even the chaos in the past year. But it seems pretty extreme, so talked to my PCP about it. He ran a bunch of tests and found that my Vitamin D is extremely low. So I am on high dose supplements and hoping that will help with my hair, and also my fatigue! It would actually be GREAT if this simple fix could improve my fatigue! 


Vascular Lesion?

Well the idea of a vascular lesion was promising, but it turned out to be kind of a bust. I went for the MRI shortly after my last post. It was a different kind of MRI, and it was done at MD Anderson. I was told I wouldn't have results for a week. Then the next day, radiology called me back and said they wanted a closer look at some things, and could I come back the next day for another MRI.

I arrived at my follow up appointment with great anticipation, hoping this would finally be the day of answers. I actually tried very hard not to get my hopes up, because the doc wasn't very helpful the first time I met with him. When the doctor walked in the room, he said, "Well, we still think it is what we thought it was. We think it's a vascular lesion. Here's the report that says so." I said, ok great, what kind of vascular lesion is it? He said, "Well we don't really know, that's not our area of specialty." I said, ok, well what is the standard for following up on this? "I'm not sure, but Barrows is the best and I bet someone over there can help with this." I said, ok great, but can you tell me what the radiologist was looking for when he called me back for a second MRI the day after my first? "Well I'm sure he just wanted a better look." I told him it seemed pretty specific, and that the radiologist and the MRI tech had been on the phone for most of my MRI, and it seemed like they were looking for very specific things. He flat out said, "yeah, I don't know." I said, well can you ask him and let me know? He said yes and that he would call me, but he never did. 

After that completely useless meeting, I took a copy of the MRI disk and the report to Dr. Najaki, the Barrows neurosurgeon who has been keeping an eye on my MRIs throughout the past year. He is a chief surgeon at Barrows and deals with all sorts of brain lesions, tumors, and vascular malformations. He reviewed the images and said he isn't convinced, and he would not accept that as a diagnosis. Also, as I mentioned earlier, Mayo wasn't convinced either. So I guess it's still a possibility, but it doesn't seem very likely. As my little sister would say, "What a bust!"

Anyways....

Anyways, there are more updates to come, but if I don't post this tonight, I probably will never come back to it! So for now, there is the update, and I will be back to write again hopefully within a week. Thanks to everyone who follows me and my thoughts on this journey. Like I said, if this were a book, I would have thrown it in the trash by now! So I consider you true friends for caring enough to face this fragmented, redundant chaos with me. It's been a rough year for me, and it has helped so much to have so many amazing people on my side. I love you all! Thanks for your thoughts and prayers. I am making progress every day, and I know our prayers are being heard. 

Mandy