Happy Myasthenia Gravis Awareness Month

June is Myasthenia Gravis Awareness Month and since I’ve been mentioning it so much over the last year on this blog I wanted to take this opportunity to explain this obscure condition that needs more awareness.

I had never heard of MG before June of last year until I glanced at the results of some of my blood work and saw the words “serological Myasthenia Gravis.” When I saw my neurologist last month, he explained that he was looking for the antibodies related to autonomic dysfunction but accidentally discovered that I had the antibodies typical for MG. I imagine that some or maybe many with MG fall into the condition through happenstance. If you laughed at “fall,” then you are acquainted with this peculiar disease.

Since then, I have learned so much about this condition. MG is a rare neuromuscular autoimmune disease that causes weakness in voluntary muscle movements. It’s not as rarely diagnosed as POTS and has an established history of research and treatment. Like other autoimmune diseases, the immune system sees the body as a foreign entity with MG and begins attacking itself. It does not attack the muscles but specifically the receptors that allow muscles and the brain to communicate. Maybe you can see the problem here. Here is a great infographic that does a better job explaining this. I’m just a Humanities nerd, so the science bit is always above my head:

As mentioned above, common symptoms include droopy eyelids and weakness in muscles that affect facial movement, chewing, breathing, swallowing, talking, and limb mobility. MG was termed the “rag doll disease” because of the severity of the muscle weakness. The ocular symptoms are the most common symptom in MG, and some only experience the ocular symptoms. The level of disability and severity of symptoms can really vary person to person. Men, women, children, and even animals can get the disease, and in some cases the disease can go into remission.

Like Dysautonomia, MG can be considered an invisible illness yet the symptoms can manifest visibly. As with most complex conditions, diagnosis can be tricky. I am going on year three of working toward a diagnosis but for some it can take many years. There are blood tests that can identify the antibodies that are specific to MG, EMG tests, breathing tests, and your medical history can help your doctor determine if you have this disease. Myasthenia is usually only fatal during a “Myasthenic Crisis,” which means respiratory muscles become paralyzed and the patient needs ventilation.

About two and a half years ago, I started having difficulty walking and my breathing problem that started with POTS was getting worse. I tried to brush it off for a long time. When I saw my doctor’s NP, she also brushed it off. Yet, my mobility was rapidly declining. I had to start driving between all of my classes I was teaching and eventually, after much fighting, fretting, and cursing my fate, I started using a cane. Then a few months later, I had to get a walker and then over the last 9 months, I've had to use a wheelchair. My breathing problem has also declined rapidly.

My doctor had me start taking Mestinon, a drug commonly used to treat MG. This drug provides the acetylcholine that the immune system attacks in MG so that the brain and muscles can communicate once again.  My breathing improved immediately with this drug, and I’m dependent on it to breathe normally. From August-November, I spent almost every day in bed, but since I started the Mestinon I only have to lie in bed on bad days or if I push myself too hard. It has given me some quality of life back. Yet, this is a short acting drug and has to be taken every 8 hours. It treats the symptoms but does not treat the mechanism of MG by stopping the body from attacking itself. 

I have documented my journey with diagnosis extensively on this blog because it’s been a difficult ride. I have the antibodies but the number is small and my EMG results were mostly normal. If one the antibodies for MG, it is considered a “serological diagnosis." Some with MG are "seropositive" with the antibodies and some are "seronegative" who test negative for all of the antibodies. I also did a spirometry breathing test earlier this year and that was very abnormal. My neurologist explained that it’s still indeterminate at this time. I’m also having some problems such as intense balance issues that are not typically related to MG. Like I said, the journey to diagnosis with many complex conditions is long and bumpy.

Treatment usually includes Mestinon, immunosupressants like Prednisone, IVIG, and plasmapheresis. In my experience with Dysautonomia, the treatments and research about the condition have been extremely limited and recent. There are “common” treatments for Dysautonomia but essentially every treatment is “off-label,” meaning there are no drugs to treat it and doctors use drugs for other conditions that have beneficial side effects for Dysautonomia. There are established treatments for MG and it has a much longer history of research. Yet, these treatments for MG can come with serious side effects. My doctor explained that this is why he has been waiting to be absolutely certain before diagnosing me. I know that many have also heard this from their doctors. I have learned an important lesson about the stakes involved in diagnosis this year. 

The thymus can play a role in Myasthenia and about 15% of people require a thymectomy. The thymus can become enlarged or have tumors, either benign and rarely malignant, called "thymomas." Removal of the thymus offers the best chance of remission of symptoms compared to other treatments. I have even heard recently of doctors removing the thymus even if there aren’t any problems with it because that can be beneficial sometimes. Just a few days ago, I had a CT Scan of my thymus to see if it needs to be removed.

Yet, the fact that there is treatment provides hope, and hope is a treatment in itself.

Maybe you found this blog and this post when searching about MG, or POTS, or chronic illness, and information and knowledge is a vital step in learning about conditions you may have and all of us raising awareness about invisible and rarely diagnosed conditions. Yet, knowledge is only a piece of the puzzle.

When you get a diagnosis, arming yourself with knowledge is only half the battle. Something that I wish someone would’ve told me when this chronic illness journey began in 2011 is that acceptance is your greatest survival tool in your arsenal in living with illness. There will be self-blame, guilt, and profound disappointment, but acceptance can help you live a full life no matter what illness throws at you. Someone in the great circle of being pointed their finger and chose you as the lucky winner to bear this absurd burden. I try to remember this is not my fault. I didn’t choose this, but I accept this burden and seek to make a life bearing it with grace and dignity. These are hard-fought lessons I am continuing to learn and I think they deserve a place among the science and physical realities of any illness.

If you are out in social media, check out and participate in the hashtag #IhaveheardofMG, a movement to give MG more awareness and a face for the condition. 

I leave you with this great video from 1935 that shows the early days of the discovery of acetylcholine treatment for MG. Wait until the end when the woman begins to mop. Every time I attempt to do house work I think of the smile this woman has on her face because I couldn’t do it without that drug either. 

Also, check out the links section of the blog for more information about Myasthenia.

What Helps: Mobility Aids

This post is partly courage-training and partly the continued story of metamorphosis. Getting over that first hurdle—physically and mentally—to start using a mobility aid can be daunting so I wanted to share my experience. Many years ago, a lifetime ago even, I was a gymnast. I was the tallest on my team but I was a powerhouse. Floor and vault were my events. Let’s pretend uneven bars never happened. I used to soar in the air. We had a trampoline in our backyard and I would experiment and create new tricks all of the time. I remember what it feels like to fly.

For years, I was an avid hiker. My husband and I live two hours away from Yosemite National Park, and we would go hiking often, usually difficult, all-day hiking. On the long way up, sometimes you question why the hell you would ever choose such torture, but when you get to the top you feel exhilarated because you literally just-climbed-a-motherhumping-mountain.

Having to use a mobility aid before my geriatric years wasn’t my plan. Not everyone with POTS/dysautonomia needs a mobility aid, but some may be dependent on them. With dysautonomia, the body is struggling to maintain homeostasis and keep blood moving to essential organs, so movement and exercise can be exhausting and taxing. Gravity is a bitch for the vertically challenged, and sometimes the only way to be mobile and leave the house is to use a mobility aid. When the realization sets in that some kind of mobility aid is needed, it’s a disappointing and scary prospect. The physical struggle can pale in comparison to the emotional struggle to accept having to rely on a mobility aid. This is an invisible illness, and when you take that first step to get aid, it is no longer invisible, and some may question why you would need it if you “look fine.” Whatever our preconceived notions are about what disability and illness “looks like,” those notions are wrong.

I suddenly started having trouble walking a year ago. Since the POTS started, I have struggled to be able to stand still for any length of time but I could walk. Walking more than 30 feet at this point is extremely exhausting and precarious. My doctors have told me that the walking issue is not related to dysautonomia, so I am once again on the long road to diagnosis to figure this mystery out. Comorbidity and compounded illnesses are typical with dysautonomia.

I started using a cane in November last year, but I needed one long before that. Almost all dysautonomiacs have been told by some doctor somewhere somehow that it’s “all in your head.” Being told this when you are unable to function as a human being can permanently warp how you mentally navigate your disorder unfortunately. Unraveling the stranglehold this kind of invalidation has on your psyche can be a battle. I'm still trying to unravel it, so I spent months trying to pretend it wasn’t happening and believing that it was all in my head. 

When I finally relented and bought the cane, I was relieved. It has made getting around much

Sitting FTW!!

easier and I use it almost all of the time.  I also put off getting a disability placard and it has also changed my life. On the bad days, the VIP parking makes all the difference. I’m learning to let go of my pride and let my desire for a higher quality of life take over. The walking problem has worsened so I upgraded (downgraded?) to a walker, and I am also using a wheelchair. I can either leave my house more and use my wheelchair or walker or I can try to walk longer than 10 minutes and have to spend the next few days bedridden. Those are the breaks. Now I have to figure out how to decorate them. I bought my cane and wheelchair at a local medical supply store, but there are some websites with mobility aids, and I really want a cane from fashionablecanes.com.

For the chronically ill. you’ll encounter a variety of responses in the world when you have your cane, walker, wheelchair, etc. You’ll get

1.      Double-takes: “Why does she need that if she looks fine?” “Is that cane a fashion statement?” “Why is she pushing her grandmother’s walker?”

2.      Stares: Your days of blending in are over. At least look fabulous as people stare at you.

3.      Looks of terror: When people see me, sometimes they jump out of my way, rush to open the door, tear their children from my path. This comes from a place of kindness and can be pretty amusing.

4.      Questions: People will ask you about it. I don’t mind that much but I have never found a succinct way of explaining it. I was at a store with a friend recently and a guy said “You look too young to use that walker.” So I said “Oh, I’m older than I look. I’m actually 75.” Depending on how snarky I feel that day, my response varies. People will often ask if I was in an accident. Sometimes I’ll give them the 10 minute explanation of what is happening. They asked for it!

5.      Derision or Annoyance: This one is rare, but it can happen. If you are a human being in the world, you’ll encounter douchebags everywhere. Some don’t understand what it is to have an invisible illness and refuse to try to understand. These people have worse problems than needing a mobility aid. Try to smile at their ignorance.

6.      Sympathy: This one makes me the most uncomfortable. I don’t feel sorry for myself so please don’t feel sorry for me. I don’t mind if you want to hold the door open for me though.

This experience has given me a profound appreciation for the struggles of those who have been disabled their whole lives. Being disabled makes everything more complicated. Before this, I had no idea what the disabled went through on a daily basis. I had no idea how people treated them. I had no idea what a constant struggle it is. I had no idea how much people will focus on your difference. 

When I finally accepted that I needed a mobility aid, my life changed for the better, but I still resist every change along the way. I constantly tell myself “You can hold on to your pride and suffer and be home-bound, or you can get out in the world and try to live a more full life. You are not weak when you use resources. It takes an incredible amount of courage to take steps to protect your health.” Find the words you need to tell yourself to let go of whatever is standing in your way (no pun intended).

I may be kind of broken, but I can still do this

I may use a walker, but I’m still strong and athletic. Whatever abilities you had in the past do not matter anymore, but today does. Don’t let others' perceptions determine how you manage your health and the choices you make. You can take charge of your health and make a new life in the body you have now.   

Ups and Downs

The Downs 

Bedridden days, needing to go to the ER to beg for an IV, having to call a sub to cover my finals, not getting to say goodbye to my students, unable to drive, missing more work and events, unable to leave the house, comically starting a small fire in my kitchen because I’m too ill to cook. The many adventures of being kind of broken. The plot twist had a predictable ending. I expected to end my first year teaching full time in celebration. With a bang, not a whimper. I should be plowing through my last bit of grading so I can get the party (summer vacation) started, ready to fully participate in the first time I have ever had summer off since I’ve started teaching. I was supposed to be strong and ready. Things have gone downhill again. Something has shifted. A slight turn. The jump to the next lily pad. The last six months may have been the worst since this thing started. I long for some normalcy. Some simplicity. To do the things I took for granted not so long ago. 

The Ups

It may have been unspeakably brutal, but I did make it to the end of the semester. I had a student nominate me to be honored at an event and I had students tell me honestly how much they enjoyed working with me. I saw improvement in their work and I helped to get them there. I feel triumphant. I was a sick, lump of a person often, but I still managed to make a difference. I know that most people would have left a long time ago but I pushed through.

I got a walker—despite putting off that moment for many months. But I feel triumphant to finally have the courage to let go of my pride and do what I have to do to get around. It has a seat! I’m going to get a cup holder for it too.

Mel and I rocking some slow jams

I played music. I sang some of my own music in front of people two weeks ago, playing a short set. I have been waiting for that moment for two years. Singing and performing has become extremely difficult because it is so taxing on my system. It’s really difficult to sing when breathing is such a struggle, especially the way I like to sing, with every pore in my body. I was bedridden the day before we played. But I did it. I feel triumphant. I hope to do it again soon because I have new songs I’ve written that I’ve never played. I want to reclaim my life as a performing songwriter. 

2014 thus far has been little else but ups and downs. Triumphs tempered by setbacks. But this is the reality of chronic illness and a rare illness at that.

I don’t consider myself unlucky or trap myself into thinking about fairness. I try not to think in such relative terms. I feel blessed that I now have two months to try to regain my strength, reclaim some of my lost identity and passions, talk to my doctors, spend time with my wonderful patient husband, and figure out the way forward. Ready for some good days, some joy, and some air conditioning.