a new year brings a new neurologist

After attending the Dallas symposium and the L.A. conference, I was convinced I needed a new neurologist. While I’d been with Dr. Brod since my NMO diagnosis in 2003, I never felt completely confident nor comfortable with him as my primary neurologist. He did manage to pull through with getting me the Rituxan therapy, but there had been numerous times when he was not readily available during one of my attacks. Instead of getting a hold of him (who knew my case best), I would be connected to one of his on-call colleagues who refused to prescribe me the necessary meds, mainly steroids over the phone because they were “not familiar with my case.” Instead, I would be told to proceed to my nearest ER to get the proper meds, and this would irritate me to no end because why should I have to wait in the ER and pay a hefty ER bill for something I already knew I needed? Also, all of the ER attendants I’ve dealt with in the past never knew exactly what NMO was, and they would take a very long time consulting other doctors or even the big medical handbook before coming back to tell me I needed steroids and I needed them quick. (Duh!) The other problem with Dr. Brod’s inaccessibility is that NMO exacerbations require a quick administering of treatment because symptoms worsen so severely in such a short amount of time. Within hours, a NMO patient could go from normal motor function or normal vision to paraplegia or complete blindness in one or both eyes. This gives more reason as to why NMO attacks need to be treated ASAP. And with all the difficult times I’ve experienced in trying to get the proper care through Dr. Brod or his associates, I finally decided to start seeking a neurologist elsewhere. I was tired of dictating my own healthcare; even though I’m an educated patient, I’m still the patient, and the fact that these doctors seemed so stingy with their medical advice, I just grew impatient and exhausted.

But enough about that. This is not at all a post about bashing particular neurologists–that is not at all my intention. It is more like an editorial review of my care in the past versus my present (and hopefully future) care.

I first met Dr. Benjamin Greenberg at the Dallas symposium where he was the hosting physician. I had expressed at the time that I was not 100% happy with my current care team, and so he suggested I try coming to his NMO clinic for a second opinion. And that is exactly what I did on January 6th.

John and I drove up to Dallas Wednesday evening for my appointment with Dr. Greenberg Thursday afternoon. I came prepared with a list of questions and concerns (which is key to having a successful doctor’s appointment–I’ll blog about how to manage your care team soon) and spent about 90 minutes with Dr. G. He thoroughly addressed all my issues, and I could tell by our discussion that he had indeed gone over my medical records and MRI films. I liked that he did his “homework” and was familiar with my medical history. My vision loss, he said, seems to be the main manifestation of the disease, and he attributed this to two reasons: (1) there is damaged myelin around the optic nerve fibers, and (2) there is damage to the actual optic nerve “wires.” The former, he said, would be easier to repair; the latter, not so much. There are, however, two studies currently happening. The first is getting the patient’s myelin to reproduce within the patient’s own body. The second is to inject stem cells into the back of the patient’s eyes and cultivate them to regrow optic nerve fibers and myelin. As for the timeline, I have no idea. Dr. G did reassure me that we are closer to figuring out NMO than MS, which is utterly ironic considering MS has so much more funding and awareness than NMO.

We also discussed my ongoing Rituximab treatment. Currently, I was only being reinfused once my B-cell count reached above 2% (normal range for a healthy human being between 2% and 10%). With this measurement, I’d been able to avoid reinfusion for an average of at least 12 months. Dr. G, however, has a protocol of reinfusing his patients every six months regardless of the B-cell count. When I expressed my desire to prolong the Rituxan as long as possible (who wants to get chemo when they don’t feel they have to?), he said it’s ultimately up to me, but then monthly B-cell and CBC monitoring becomes crucial. He also mentioned that there seems to be cases in which patients who wait for some B-cells to build back up in their system before killing them off again with Rituxan develop a resistance to the Rituxan. This is rare, he affirmed, but it has happened, so why allow the possibility of resistance? Why not keep the B-cells from ever coming back? Why not continue Rituxan infusions going every six months before any B-cells return? Hmm…interesting point he makes here. Now I’ll have to think more about this matter.

Dr. G also said there seems to be a trend in patients when the B-cell count reaches 1-2%, there is only a two-week window after that when the patient’s B-cell count will skyrocket to 7% or higher, placing the patient at high risk for an attack. This means getting the proper immunosuppressive meds within those two weeks is also crucial, so he prefers to keep the patient’s B-cells at bay with more regular infusions.

I told Dr. G I was concerned with how long I could remain on the Rituxan, explaining that I’d read how patients were sometimes taken off the Rituxan after five years. Dr. G said as far as he knew, as long as the patient was responding well to the Rituxan (i.e. the drug was keeping attacks at a minimum), he saw no need to move on to a different treatment. He admitted that he did not know the long-term effects of Rituxan on NMO since it was mostly used for cancer. He mentioned that he does know someone who has used it for NMO for nine years.

After we talked some more about drugs and treatments for the acute symptoms I experience most frequently–including neuropathic pain, sphincter dysinergia (when it’s hard to get the urinary flow started or if the flow tends to stop mid-stream), a low libido, insomnia, and fatigue–I asked if he could recommend me a local neurologist in Houston with whom he could work together with for my care. He referred me to Dr. George Hutton of Baylor, saying he was a neurologist he fully trusts. He is also going to recommend me a PCP as John and I have been in search of one ever since we moved to our new home in a different part of town.

After discussing the “serious” stuff, we shot the sh*t a little bit. Dr. G asked both John and me what we do.

“Aren’t you a chef or something?” Dr. G said.

Surprised, I had to laugh. “No, I’m in grad school for writing,” I said, tickled that somehow, the existence of this website must’ve traveled through the NMO grapevine to the doctor’s ears.

Overall, I felt my visit was pleasant and thorough. It was worth the trek to and from Dallas. Of course, if you ask John if it was worth it, you may get a different answer. But in return, I am rewarding him with one free round of golf.

thoughts on d’s passing

After I was officially diagnosed with NMO in 2003, I went online in search of any information I could find about Devic’s. As it was such a rare disease, the search results were minimal. But I did find an online support group. This was where I met R whose son, D, had NMO. Throughout the years, during my most difficult attacks, R had been a constant support via emails and phone conversations. She gave me hope when life looked dim, lending her positivity to not only myself but others in our NMO family. She did this all the while with her own son’s health deteriorating to the point where he had become quadriplegic and blind.

It is with great sorrow that I received the news from R that D passed away Wednesday evening at 6:45 PST. And while I can only share a fraction of the family’s grief, I also share in their relief in knowing that D is no longer suffering and has gone Home. At the end of his days, D was not only having trouble swallowing, talking, and breathing, he also experienced mental loss and dementia. He was unhappy and fearful, as any of us in his position would be. In the words of his mother, he had endured too much for too long. And so it is with his passing that his family may move on to a new chapter in life.

This doesn’t mean there will be an absence of grief. I was feeling blue after I’d heard the news on Wednesday. John, in trying to cheer the both of us up, played this TED Talk by Neil Pasricha on the 3 A’s of “awesome.” It was humorous, touching, and inspiring. TED Talks are sponsored by a non-profit organization (TED) dedicated to “ideas worth spreading.” I invite you to watch the TED Talk and find out how to live more awesomely. And who can’t use just a little more awesomeness in life?

• Watch the Awesome TED Talk.
• Get the Awesome book.
• See the blog that started it all.

2010 rare neuroimmunologic disorders symposium videos online

I got an email from the TMA a few weeks ago saying that some of the video recordings from the Dallas event are now available for viewing. To stream them online, you will need Flash or HTML5 (iPad or iPhone) enabled browsers. You can also download the videos in mpeg4 format for viewing offline. Either way, go here to watch, but before you do, make sure your brain is ready for the dense medical talk.

holiday blues

Okay, so I was overly ambitious last week and claimed I would blog every day up until Christmas. I had the ideas all lined up in my head: holiday recipes, shopping suggestions, and so on. But then the days flew by, and I found myself busier and more tired than expected. Come Christmas Eve, I was wrapping gifts, making jam (which I had planned on bloggig about), and cleaning house. Then Christmas Day, I woke up early to start cooking, followed by four hours of my side of the family, followed by cleaning up, followed by three hours with the in-laws. By 11:00 PM on Christmas, I was ready to crash.

At 5:20 AM, I woke up with pain in my back. It wasn’t the usual neuropathic pain and banding feeling I often get in the middle of my back. Instead, it stemmed from my lower back and felt like my spine was crunching down upon each other. Then the pain radiated upward and to the right into my shoulder blade. I took a Vicodin anyway and went back to sleep. All of Sunday, I napped here and there and felt nauseous. Maybe it was the Vicodin. Maybe it was something else. I couldn’t stomach anything except for a Muscle Punch from Smoothie King for dinner, and I still threw that up a few hours later.

On Monday I felt better; I was hungry in the morning and was able to keep down the small meal I reheated in the microwave. Was it a stomach virus? A 24-hour bug? Exhaustion? Over the past ten years or so that I’ve had to deal with NMO and its various symptoms and conditions, I’ve noticed that my percentage of flare-ups increase during the holiday season. Why is that?

After I was first diagnosed,I read any literature I could find on autoimmune diseases. I discovered that autoimmune diseases, as with many diseases that inflict Americans, are linked to stress. While poorer countries fight famine and other basic illnesses, developed nations like America deal with stress and the whole spectrum of diseases that come alongside it. Even for the average healthy person, holidays can be a time of high stress. But for those of us with NMO who try to strive for independence and do all the “normal” things “normal” people do (e.g. cook lavish dinners, host lavish parties), stress takes on a whole new level and meaning. And for people like me who have a mild case of OCD, the stress level rises even more–everything has to be just like so.

Ever since the NMO Patient Day, I’ve been in regular contact with E and J; we bonded quickly because of our shared lifestyle (somehwat newly married) and disease (NMO). It was interesting to realize that despite our daily battles with NMO, all three of us hosted holiday gatherings in our homes. Perhaps playing hostess is something we’ve always loved to do even before we were diagnosed. Perhaps hosting the holidays helps us feel “normal.” Perhaps it’s a way to prove to others and ourselves that we can be “normal.” But is it worth the aftermath, the exhaustion, the vomiting?

Last week, the thought of falling behind on my blog kept nagging at me in the back of my head. If I take something on or give my word to something, I always make sure I follow through. So knowing that on Monday, I had said I was going to write a post every day, but by Thursday when I realized it wasn’t going to happen, I was mentally beating myself up inside. But then I told myself that the few regular readers I have out there will forgive me, especially if they knew I was trying to take care of my health, and I felt better. Then I knew I had to forgive myself, and I would feel much better. We are always hardest on ourselves, aren’t we? I need to break this senseless cycle of stress because it’s not doing anyone any good. So here’s to not keeping my word, here’s to not caring so much, not stressing out, not taking myself so seriously. Here’s to better health.

fighting fatigue: why cyber monday trumps black friday

Many of us who live with NMO (and almost all other autoimmune diseases, for that matter) experience fatigue. Fatigue is one of those funny things to have: externally, nobody can tell you’re suffering from it but internally, you just can’t help feeling like a big sloth. Even my husband who loves me dearly (but who can’t possibly know what it feels like to be me) often says, “You’re always tired!”

Because NMO affects our neurological system, it is often frustrating to feel certain sensations (e.g. pain, tingliness, numbness, temperature changes) and have them not manifest on the outside of our bodies, a “proof” of some sort. Oftentimes, I feel like when I tell people how crappy I’m feeling, they look at me strangely and nod knowingly, pretending to sympathize but really not fully believing the extent of my complaints. After all, open bleeding wounds you can see. But not pins and needles poking you from the inside. For many of us A-type personalities, fatigue is especially a thorn in our side as we prefer to be on the go but this thing prevents us from doing so, and the self-critical devil on our shoulder taunts us, saying others will think we’re just being lazy, that we’re faking it. And thus is the complexity of fatigue.

As you can tell from my previous posts, I had quite a Thanksgiving. It was the first one in almost a decade that I’d cooked, with the help of my sous chef husband without whom I could not have pulled this off, a feast almost entirely from scratch (with the exception of the stuffing and corn). The food was insanely delicious–even with nearly 30 pounds of turkey, we had only three legs left over at the end of the night. Yes, our guests tore it up; many of them even said it was the best turkey they’d ever had. But despite the happy stomachs and good times, all the preparations and festivities left me exhausted. When asked if I planned on doing any Black Friday shopping, I could only look aghast: “Are you kidding me? Who has the energy?”

Apparently, everyone without NMO (and even some with NMO) does. The truth is everyone shops on Black Friday. It’s Christmas on steroids. It’s sad, really; this magical season turned consumerism. On Wednesday afternoon, John and I counted twelve people already waiting outside Best Buy for Black Friday. Folks, I said Wednesday afternoon. That means they were going to wait over 48 hours, through rain and cold, to save a few bucks. Okay, so I know the times are hard, but seriously…48 hours?!

Last night, I asked John if he remembered when this ridiculous tradition of Black Friday began.

“I don’t know. Maybe two or three years ago?”

No way, I said. Black Friday had to have been around since the ’90s. But neither one of us could determine when people started staying up all night to line up outside Wal-Marts, Best Buys, and outlet malls to flood the aisles at door’s open to grab and claw at discounted items. And where did the term “Black Friday” come from anyway?

According to this site on Black Friday history, the term was coined as early as the 1960s when accounting books were kept by hand, and stores were said to move from the red (indicating a loss) into the black (profit). Ever since the first Macy’s Thanksgiving Day parade in 1924, the Friday after Thanksgiving was the official kick-off to a bustling holiday shopping season. Then in the 1960s, the Philadelphia police dubbed the day after Turkey Day “Black Friday” when complaining about the traffic and pedestrian congestion on the streets.

I can’t recall a time when I actually stayed up all night or woke up extra early to make it to a door buster sale on Black Friday. And now that I’m blind, the chance of me doing so is even slimmer. I already loathe crowds to begin with, and when you have poor vision, the noisy herd of people pushing and poking at you is just not worth the stress when you can’t see well enough to be on guard. It is an over-stiumulation that easily exhausts me.

Which brings me to my topic of why Cyber Monday trumps Black Friday. Cyber Monday is indeed only a few years old. Started in 2005, Cyber Monday denotes the Monday after Black Friday when people have returned to their usual routine yet still itch with the shopping bug do most of their shopping online. Following in the suit of Black Friday, online stores (whether they have an actual brick and mortar store or not) deeply slash their prices in order to up their internet sales. And many stores like Best Buy, offer almost all of their Black Friday deals online. You can see if the item’s sold out at the click of a mouse, and you don’t have to wait in line. That’s exactly what we did the last two Black Fridays when we wanted those Samsung TVs.

Shopping online is the biggest convenience, especially for blind people. You don’t have to deal with crowds, you don’t have to figure out how to get to and from the store, you don’t have to wait in long checkout lines. You simply use JAWS or other screen readers to find what you want and click “Confirm Order.” And volia! You’re done. And you did it all in the comforts of your own home or office.

In pondering participation in the Advent Conspiracy, I didn’t plan to do a lot of shopping this year anyway. But when I woke up this morning with all these great deals in my email inbox (like the $10 off a $25 purchase and free shipping at Origins), I might have to do a little shopping after all. And the best thing is I would not have stayed up all night standing out in the cold waiting for these deals. And I then had the energy to pump out this post.

recap: 2010 nmo patient day

On November 10, John and I found ourselves in the Hilton in Beverly Hills, California, at the second annual NMO Patient Day sponsored by the Guthy-Jackson Foundation. Similar to the symposium I went to in Dallas back in September, the NMO Patient Day was a gathering of patients, their caregivers, clinicians, and physicians; I reconnected with some of the people I had previously met just a few months before in Texas. The Patient Day, while similar to the symposium in that a part of its purpose was to dispense information addressing issues NMO patients are concerned with (e.g. latest effective treatments, future of research, available resources), the main difference was that the NMO Patient Day was just that: a day with only NMO patients whereas Dallas included TM and ADEM. Another difference, related to the fact that the symposium was threedays versus the Patient Day being only one, was that the Patient Day felt much less dense; there were scientific talks but my brain didn’t hurt by day’s end. That’s because the event really was geared toward patients and not a medically-minded audience of doctors and research scientists. After opening remarks by Victoria Jackson who founded the foundation with her husband, Bill Guthy, after their daughter was diagnosed with NMO, the program went straight into explaining what the foundation has been doing in the past year or so. A clinical consortium had been set up between three NMO centers to work toward advancing medical research and thus, patient care: the Scottsdale Mayo Clinic with Dr. Dean Wingerchuck, the UT Southwestern‘s NMO Center in Dallas headed by Dr. Benjamin Greenberg, and the Johns Hopkins Neuroimmunology department in Baltimore with Dr. Michael Levy. The purpose of the consortium is to collaborate in research in order to advance the sciences and studies of NMO. Because of these efforts, largely due to the support from the Foundation, we are now closer to figuring out a cause for NMO than for MS despite the massive funding and years MS has over NMO. (This, at least, was what we were told; as far as how this is so, I have yet to understand the reasoning.)

The IgG biomarker, in fact, which was discovered by the Mayo Clinic a few years ago to test for NMO, was the first antibody ever found in an anti-inflammatory disease. The IgG existence indicates that NMO is indeed its own disease and not a form of MS. (Now if only my friends can remember this and quit thinking I have MS.) But this medical advancement helps NMO shed its orphan status, be recognized as a unique disease, and thus attract more research.

There was also a huge push to join the NMO repository of the Accelerated Cure Project (more about this in a future post), which I’ve already done in my previous Dallas trip. This time in L.A., John even joined as a control subject. This was followed by a Q&A session between the NMO audience and a panel of physicians. Some interesting things I heard:

• There was a study in France showing that women with NMO actually experienced a decrease in relapse risk during pregnancy. (I have a friend with lupus who said the same happened for her; perhaps this points to a link between hormones, immunology, and disease remission.) Postpartum, however, the risk for relapses is higher than usual. This means there is a very small window in which one can get pregnant and have her baby safely before having to get back on her meds right away. This also means breastfeeding is unlikely.
• Both Dr. Wingerchuck and Dr. Greenberg follow Dr. Bruce Cree of UCSF‘s protocol of reinfusing a patient with Rituximab every six months regardless of whether or not the B-cell count has risen. My current neurologist does NOT do this, and this is something that’s been on my mind lately because I’m thinking of switching to Dr. Greenberg in Dallas but at the same time do not want to have more frequent rounds of Rituxan.
• Receiving prompt treatment (e.g. Solumedrol) for acute NMO attacks is extremely important as the immediacy of the treatment is directly correlated to the legnth of the recovery process. In the UK, there is a medical card patients carry with them, and whenever they enter a doctor’s office or the ER, the card can be scanned to pull up the patients’ entire medical records, including a protocol put into place by his/her neurologist on how to treat acute attacks. The U.S., of course, does not have socialistic medicine, so this method would not work. But the importance of having such a treatment regimen in place is recognized. I can attest to the frustrations of going to the ER for an acute attack and having the medical attendant stratch his head, asking me, “How do you spell your condition again?” It’s tiring when you have to conduct your own treatment in the face of pain, paralysis, incontinence, blindness. If NMO has taught me anything, it’s that doctors are just as humanly fallible as the rest of us.

The Q&A was followed by a stem cell therapy presentation by Dr. Richard Burt of Northwestern which I’d already seen in Dallas. Then Dr. Daniel Siegel a psychiatrist from UCLA, switched gears up a bit and talked about mindful awareness/meditation and the importance of it for everyone, especially those with NMO as our disease alone is such a huge source of stress. He took the entire audience into a mindfully aware state, instructing us to concentrate on our breath and our selves. He said that during meditation or mindful awareness, our brain is completely active–this is not relaxation, where the brain is inactive. I have been told for years by numerous people that meditation would be good for me. My friend Karen bought me Wherever You Go, There You Are five years ago. I never finished the book. My aunt tried to teach me tai chi; I grew impatient and gave up. I downloaded meditation podcasts but never listen to them. A therapist I’d seen showed me meditation techniques, but I’d given up on that too. It’s like my brain knows it’s good for me, but something hasn’t clicked into place for me to actually actively pursue it. I did tell John while at the Patient Day, though, that I was thinking of doing at least two minutes of meditation and breathing exercises every day for 30 days to see if it would be beneficial and, of course, blogging about my experience here. Now if only I can get to the point of actually starting the trial experiment.

The 2010 NMO Patient Day was a great event. Not only did the Foundation offer financial support in the form of travel grants, it offered moral support, saying that now, NMO patients have a home. We are no longer an orphan disease, patients lost and confused, knowing nowhere to turn. Now there is a growing community and plethora of information and resources people with NMO and their caregivers can turn to when they need it. With NMO patients being the go-getter types, it was only a matter of time when we’d all band together and form an alliance and support network. It just took the vision and means of Bill Guthy and Victoria Jackson to make it all happen. So thank you to Bill, Victoria, Dan, and the entire staff behind GJCF, for such a successful 2010 NMO Patient Day.

who gets nmo?

This question has posed a puzzle for doctors and scientists for years. Who is likely to be diagnosed with NMO? What triggers NMO? What are the underlying causes of NMO? How can NMO be prevented, treated, cured? Like other autoimmune diseases, nobody has the answers. From what I’ve learned through the course of my condition by personal research and the 2010 Rare Neuroimmunologic Disorders symposium, a person with NMO has to: (1) possess the genetic susceptibility for the disease, and (2) be exposed to the environmental factor that triggers the disease. Both must happen in order for NMO to develop; they are not mutually exclusive.

On that note, I recently attended the NMO Patient Day in L.A. sponsored by the Guthy-Jackson Foundation (to be outlined in a future post) where I befriended E and J, two young women who, like me, are ambitious and proactive types. All three of us are “newly” married without children–E for three years, J for three months, and me for six months. All three of us are thinking about possibly having children, forging forward in our vocations while being good wives to our husbands. Over dinner while the men talked man talk, E, J, and I discussed how it seems most of the people with NMO share similar qualities: determined, intelligent, strong-minded and strong-willed personalities. Nobody we met was just sitting around on their couch watching “Jersey Shore” marathons. Everyone was doing something in addition to dealing with their NMO. And almost all of them were women.

What did this all mean? E, J, and I had no idea, but I pointed out that it seems autoimmune diseases often inflict people with high stress levels. This is no surprise since most of our attacks and symptoms arise almost immediately after or even during stressful life situations. (This was, in fact, noted by the doctors.)

I thought back to all the people with NMO I’ve gotten to know over the years either online, on the phone, or in person. All of them, with the exception of two (one whom I never had contact with but I’ve kept in touch with his mother), all have been female. Additionally, all are driven, and compassionate individuals. Everyone has been open in sharing their stories and struggles; perhaps this is due to the fact that NMO is very rare and so we have to be candid with our lives in order to make connections which are rare in itself since our network is so small. E pointed out that most people she’s met with MS are much more private about their condition, and I reasoned that because MS is more widespread and the research more advanced, MS patients can keep quiet and still receive adequate treatment. NMO, on the other hand, is an orphan disease, and so with the little research and resources available to NMO patients, we feel we need to speak up, speak out, and speak loudly about our disease in order to move and shake the medical world. “Hello! We need help too!” But when I think about S and B whom I’ve been in contact with for several years now ever since my diagnosis in 2003, I find that they, too, are like E, J, and me. Of course, the future of NMO medicine cannot simply be hinged upon similar traits without hard evidence, but I can’t help but wonder why the majority of us with NMO are this particular type of woman. Any thoughts?

recap: 2010 rare neuroimmunologic disorders symposium

Three weeks ago, I attended UT Southwestern’s 2010 Rare Neuroimmunologic Disorders symposium in Dallas, Texas. At the time, it seemed like three long days of sitting in ballrooms listening to medical jargon for eight hours a day; my rear end and brain hurt by the end of each session. But somehow, like Rituxan, I knew it was one of those things where I had to suck it up because in the end, it would be good for me.

When we first heard about the symposium, John had said that the more we know, the better we’ll be equipped to deal with the future. So despite the time and efforts and money it took, we showed up, laptops in tow–mine for note-taking, John’s for amusement should he get bored. (And if you know us, both were inevitable.) The symposium was broken into two sections: the Basic Science side (for physicians and researchers) and the Clinical side (for patients and their caregivers). I mostly attended the Clinical portion except for one discussion regarding stem cell therapy done on the Science side by Dr. Richard Burt from Northwestern University.

After the long weekend, every time I was asked, “So how was it?”, I answered honestly: “Good, I guess. I don’t know. It was hard to sit through all that medical talk.” In truth, I was still digesting all the information–and boy, was there a lot to chew on. I’m not going to bore you with everything I learned. But I must say, in retrospect, I’m really thankful I had the chance to go. I met fellow patients with whom I now keep in touch, some whom I will see again at the 2010 NMO Patient Day in November. One such person I met attended the symposium alone. Her name is Brenda, and she approached me just as I was exiting the restroom. Out of the blue, she asked me about my case, my vision loss, my story. We ended up speaking at length, and when I introduced her to John, she thanked him for being such a supportive husband and taking me to this and sitting through it all. When we told her we were newlyweds, she actually started crying.

“I thought I would have to get better before God would give me a husband, but it brings me such joy in knowing that God loves you so much, he gave you one even after all this happened.” She gestured toward my white cane.

It turns out she is a reverend, and now John and I are on her international prayer list. Thanks, Rev. Bren.

And then there were inspiring stories I heard. Like Jim Leuben, the TMA webmaster. He wasn’t able to attend the event, but he was the one who sent out elaborate emails rallying people to get on board and attend the symposium. I learned from other attendees that Jim is a quadriplegic and does all his emailing and coding by blowing Morse code through a straw. How inspiring is that? So next time all you web developers out there complain about having to code something, think of Jim.

In addition to meeting patients–some coming from as far as Sri Lanka–I spoke to doctors (including Dr. Wingerchuck from the Scottsdale Mayo Clinic who saw me three years ago), nurses, and therapists. I even joined the Accelerated Cure Project (which I’ll blog about soon). The lectures, albeit at times tedious, were incredibly informative. Here are some of the highlights:

• There is some great work being done out there using stem cell therapy (“transplant” is actually a misnomer, and when I blog about this, I’ll explain why) to reverse disability for patients whose spinal cords have been damaged due to these demyelinating diseases. We watched videos of patients who had been restricted to wheelchairs for a year or more, and after the stem cell therapy, they were able to walk and even run again. (This is why we must support stem cell research–more on this soon.)
• Medical marijuana is used as an alternative treatment for neuropathic pain and spasticity (which Botox is also used to treat), common ailments of those with demyelinating diseases. (Maybe all the states will eventually legalize this?)
• There is still no answer as to whether these autoimmune diseases are genetic or environmentally triggered, although scientists believe that people who develop such diseases were: (1) genetically predisposed to it (i.e. they were born with the “correct” genetic makeup for developing the disease); and (2) environmentally exposed to it (i.e. something in their environment triggered the disease). There is still no clear evidence as to what these environmental triggers are; they used to think it was canine distemper, then measles, then it was the Epstein-Barr virus (so don’t share drinks with anyone!). (As for me, I probably had the greatest chance of getting NMO anyway–I had/have dogs, had the measles, and have shared drinks with others. Doh.) But scientists still don’t have any hard proof of anything.
• Autoimmune diseases have increased exponentially since the 1960s, and the rate of diagnosis is only increasing in women. Why? Nobody knows. But it’s important to note this because then scientists can pinpoint causation which leads to prevention which leads to cure.
• Speaking of genetic predispositions, there exists a mutated gene that some people possess which prevents them from ever developing HIV regardless of exposure. This is not to say go behave recklessly. But I found this tidbit interesting nonetheless.
• There are two things that your body can tell you that requires an immediate response: (1) I’m thirsty, and (2) I’m tired. Once you feel either of these things, it’s already too late–you’re already dehydrated, or you’re already lacking rest and relaxation. Many people with autoimmune diseases suffer from fatigue, and it’s hard because we often look fine on the outside, and others don’t understand or, worse yet, don’t believe us. Regular sleeping habits are crucial for managing fatigue; this means going to sleep the same time every night and waking up the same time every morning, seven days a week.
• Neuropathic pain is apparently very common. Thank God I’m not alone in this! I used to wonder why I got this debilitating pain shooting through my back and sides. Now I know these pains are caused either by infection, sleep deprivation, lack of exercise, and/or poor diet. I am probably always guilty of the latter two, but I have noticed that my pain pangs often follow an acute illness or several nights of unrest. Before this symposium, I sort of figured that out on my own and so would do my best to avoid sick people. And at the onset of any pain, I immediately took some Vicodin and ordered myself to bed. Now it’s just nice to know there is reasonable evidence behind my doing so.
• 50 percent of MS, NMO, or TM patients will suffer from clinical depression at least once after diagnosis.
• Just like the “coke” in Coca-Cola was once cocaine, the “up” in 7-Up was once lithium.
• With each recurring bout of bladder dysfunction I’ve had over the years when I had to have a foley catheter tied to my leg because I couldn’t urinate on my own, I have more and more trouble peeing normally. (TMI? Too bad. This is a blog about my experiences and conditions after all, and I’m going to be damn candid about it.) Sometimes it takes me a while to get started. I learned here that I have sphincter dysinergia, a condition when the sphincter muscle responsible for opening and closing the bladder malfunctions and clamps down before the urine flow is finished or even before the flow could begin. (Like the neuropathic pain, I was simply happy to at least know I was not alone in my symptoms.)
• And if you’ve read this far, here is perhaps the most interesting tidbit I picked up at the symposium: depending on which month you were born, you are more likely to develop certain things. If you are a May baby like me, you are more likely to develop MS. February like John and Joy? Allergies (and yes, they both have allergies). April? Suicide. August like my cousin Pauline? Asthma. September babies are more likely to hemorrhage in the brain. November babies get brain tumors. December? You are most likely to live to 105. Merry Christmas.

So while I knew a lot of what was discussed at the symposium (most attending patients are highly informed about their condition), I still learned a lot. So now if I was to be asked what I took away from all this, I can answer, “I’m thinking about switching neurologists.” [Cue dramatic music.] (to be continued)

2010 rare neuroimmunologic disorders symposium to take place in dallas september 24 – 26

In exactly one month from today, the Rare Neuroimmunologic Disorders Symposium will take place at the Galleria Westin Hotel in Dallas, Texas. The event is sponsored by UT Southwestern’s Department of Neurology and the Office of Continuing Medical Education. I heard about it myself through an email from the President of the Transverse Myelitis Association (TMA). The symposium’s purpose is to educate doctors, researchers, students, patients, and their caretakers on rare neuroimmunologic disorders such as Transverse Myelitis (TM), Devic’s or NMO, and Acute Disseminated Encephalomyelitis (ADEM).

These symposiums are usually held on the East and West coasts, and this year will be the first time it’s held in Texas. Dr. Benjamin Greenberg, the Director of UT Southwestern‘s TM and NMO Center, will host the event where clinicians and researchers will enlighten us on our disorders and the most effective treatments available.

John and I thought it would be a good idea to attend especially because Dallas is not too far away. Mostly, John said ignorance breeds fear, so we should be as informed about Devic’s as possible. But then we looked into registering and discovered that fees for patients and their family members are a whopping $225 per person!

The more I think about it, though, the more I think it’s still a good idea to go despite the price. I plan to contact UT Southwestern and see if I can get the graduate student price of $150. I mean, I am a grad student. Just a different field, that’s all.

• Learn more about the Rare Neuroimmunologic Disorders Symposium
• Find information about the symposium on the TMA website

UPDATE: Right after I typed the above post and was about to call UT Southwestern to ask for a discount, I got an email from the TMA stating that registration fees for attending patients and their family members have been reduced to $225 for up to a family of three. So now John and I can attend for the price of one. (I love “buy 1, get 1 free” deals.) Sadly, their reason for the reduced fees is because the symposium is in danger of cancellation due to a lack of registrants. I was about to call and ask for a deeper discount but then saw in the email that the TMA is already subsidizing between $20,000 and $40,000 (big discrepancy, no?) of the event and now will have to raise more funds to make up for the fee reduction. So I decided to suck it up and just be happy about the “2-for-1 deal. Now all we need is the “okay” from John’s boss that he can take vacation, and then, Dallas, here we come.