Myasthenia Gravis Almost Stole My Smile

Early in 2008, I started experiencing symptoms of MG. I have a mild/moderate case of MG so the symptoms began occurring infrequently. Because I was unaware of what MG was, I was also unaware of the symptoms and may have been experiencing more than I actually remember.

My symptoms became more frequent and I finally went to my doctor. He took one look at me and sent me with an emergency referral to a neurologist. Whether luckily or unluckily, I was diagnosed with MG in the summer of 2008. I say that I was lucky because MG, like other auto immune diseases, is difficult to diagnose. I happened to test positive for the Anti-MuSK Antibody Testing which guaranteed my diagnosis. Unlucky because, well, I now knew that I had a chronic disease with no cure.

I am now on medication {that I have to take everyday} and am pretty stable. I see my neurologist once a quarter. If not on my medication, I can barely keep my eyes open, have occasionally had to pull over because of blurred vision, sound like Elmer Fudd, have so much difficulty chewing and swallowing that I immediately lost 20 pounds, have arms so weak that I have to rest from blow drying my hair and sometimes experience so much fatigue that I cannot get out of bed. One of the things that affected me the most is that I felt as if MG had stolen my smile.

Because it was so hard to smile, I would often make “funny” faces in photos so that I wouldn’t look awkward.

I would get upset because I knew that I couldn’t smile and my husband would say, “Make a funny face!” because he knew that was easier for me.

I have now been dealing with my disease for five years. I have had to make major changes in my life. I have had to really listen to my body and do what is best for me so that I don’t crash and burn in the future. I have made plenty of mistakes. I have messed with my medication and paid the consequences. I have had to deal with the side affects of the medications. I have had to miss out on important things because I can’t move. I have tricked myself into believing that I am okay and have gone backwards in my symptom management.

But I have also really gotten to know myself: my body, my capabilities, my capacity, my resilience. Because I am experiencing this on a daily basis, I have learned that I don’t want to miss out on life.
I don’t want to have any regrets.

So I am forced to live a life of balance, which I am finding is a good thing.

And I have found my smile again.

– Leah Nash

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I Thought I Was Just Tired

I noticed how tired I was getting in March 2011. I never would sleep on a plane yet during one particular trip, I slept all the journey from Malaga to Manchester. I just thought it was late nights and the sun that had tired me out. Then, around late June, I started becoming aware that my vision was a bit blurry in the afternoons, even would nap in the afternoon and still, I slept through the night.

I thought I was just tired.

I observed that the after noon brought changes to my vision. I was getting worse and someone said my eye was closing yet I couldn’t feel anything. In the evening I noticed if I lay down in bed watching TV, I would see double. Again, I just brushed it off as tiredness. Eventually, it was no longer just my eyes that were being affected. Sometimes, I would walk up stairs like a toddler .

I made an appointment with the opticians to check and see what was happening to my eyes. I work at a computer with a bright light above me. I thought it was computer glare!! But the opticians were concerned. They asked me to head straight to my doctors as they thought I was having a stroke!

Luckily, my doctor was in reception and saw me straight away in which he said he would contact a neurologist but that it could take up to three weeks! I actually had to ask for a sick note until I saw the neurologist!

A week later I was lucky to visit the consultant who looked at me and said, “you’re either having a stroke or you have a tumor. What idiot didn’t admit you into hospital?! ” He then stopped and explained to me that his best mate actually is assigned specialty care to a rare disease and asked me if he could check on my strength. The doctor proceeded to say, “I think you’ve got Myasthenia Gravis”.

As I was being admitted to the hospital, my mind was whirling. “What the hell is this? Heaven knows how to pronounce it!”.

After being tested to check that I had it, (positive from a special medication and observation), I was allowed home after four days. Six weeks later I was back at work but found the stress of my job caused unwelcome changes in my body. Brain fog overwhelmed me all while trying to getting my head around this strange, new illness. I became depressed and alone. I had to give up work as I had no support there.

Now five years down the line I’ve had lots of different medications but slowly but surely I am learning how to cope with MG.

I still find it hard to explain why I can walk slowly one day but have to walk a bit faster the next moment due to feeling my muscles weakening.

To myself and others, it doesn’t seem to make sense. Standing still causes problems. Climbing stairs is hard one moment but easy the next. My face muscles are an obstacle that make up doesn’t cover. But I ignore what I can’t do and live my life the best I can.

After all, how can you explain to a two year old grandson that Nana just can’t do it as he saw you do it the other day?

– Louise Monk

Something Was Wrong, But I Couldn’t Get Anyone to Listen

October 2012 was one of the happiest times in my life. I had just married the man of my dreams in September. We had a wonderful, relaxing honeymoon and I was floating on cloud 9. I remember during this time the way I pronounced my words seemed “different”. I was having an issue with my wisdom tooth so I assumed this was the cause. Shortly thereafter, my speech was completely slurred. I scheduled an appointment with the oral surgeon (still thinking it was the tooth). When I told the oral surgeon about my slurred speech, he refused to extract the tooth. He suspected Bell’s Palsy. He wanted me to get it checked out. I’m glad he did. Over the next few weeks, my symptoms progressed fairly quickly. Slurred speech was accompanied by difficulty swallowing, weakness in my eyes, difficulty chewing, weakness in my neck and shoulders.

I made countless visits to my primary physician and the ER. Finally, they diagnosed me with anxiety. That’s right; anxiety. My symptoms were “apparently” the result of stress and I was referred to a psychologist and given anti-depressants and Xanax. Hmm, how can this be stress when I am overwhelmed with happiness? I’m a newlywed for goodness sake! I knew deep down that what I was going through was not the result of stress.

Something was wrong and I felt like nobody was listening to me.

I received a referral to a Neurologist and had several MRI’s and CT scans. In my mind, I was hoping for an answer, but I really didn’t want to know. I felt that whatever they found would determine my fate. God became my best friend. He gave (and still gives) me a sense of peace because I know that he protects me. The neurologist decided to give me muscle relaxers (big mistake). She could not pinpoint what was wrong. I kept a journal of everything I was experiencing. Every time I pulled it out to explain my symptoms, I felt like I was being dismissed. I was so proud of myself for keeping a journal. I thought this information would be helpful for doctor’s to figure out what was wrong with me.

Their response made me feel as though I was burdening them.

Finally, the neurologist suspected MG and had me do the blood work. I worried and worried and worried some more. I was scared of MG. As I read about it, I automatically assumed that a surgeon was going to split open my chest to remove my thymus gland. The test results came back and I got that fated call. “Good news! You don’t have MG. There is nothing more I can do for you so I’ll refer you to rheumatology”.

I just want to know what is wrong with me! Somebody help me please!

Of course, the rheumatologist drew thousands of tubes of blood to test. At least that’s what it felt like. And of course, nothing was found. She referred me back to neurology and guess what else she said? You guessed it. “Maybe you’re just experiencing stress.” Would I never get my answers?

I faithfully met with the psychologist. She taught me deep breathing techniques and ways to relax my mind. Thankfully, the psychologist must have a medical doctor sit in on the counseling sessions. The medical doctor knew something was wrong. She decided to put me on 60mg of prednisone for 1 week. After day 2, my symptoms were clear. Yessssss! I can speak, I can swallow, and I can chew! This doctor was a God send.

She knew it was something autoimmune and told me to contact her if my symptoms clear up. I was symptom free for about 3 weeks. Then, the symptoms slowly started coming back. I received prednisone again. They cleared up, but not as much as the first time I was given a dose of this demon drug. Eventually, all of my symptoms came back, this time with full force. Only this time, I now was able to see two of everything. Cool, right? Not! Imagine driving with double vision and not knowing which lane you’re in. I was hospitalized again.

The neurologist in the hospital was positive it was MG. I told her that I was tested and that I didn’t have it. She requested my records from the initial neurologist. She was overly ecstatic when she told me that I did in fact have MG. I must admit that I was happy too.

I finally knew that what I was experiencing had a name.

It was not stress, it was Myasthenia Gravis. She thoroughly reviewed the results of my initial test. She pointed out that I was MuSK positive. The first neurologist missed this. Do you mean to tell me I could have been diagnosed for 4 months, but she missed it? I immediately started on high doses of Prednisone (100mg) and CellCept. I remained in the hospital for 1 week. I was discharged on a Saturday and ended up back in ER on Sunday. Apparently, I developed the flu and this exacerbated my symptoms. I was treated for MG. This time with IVIG and was give Tamiflu for the Flu. Another week in the hospital went by. I was discharged and found an outpatient neurologist to follow up with.

My current neurologist noticed that I still had some weakness after my bout with MG and the flu. He decided that I needed plasmapheresis. I did this for 5 days. It took several weeks for me to regain my energy. I felt much better once I did. Finally, my MG was under control. Then life hit me with another curveball. I had a near death experience when I almost passed out due to having 4 blood clots in my lungs. Fast forward, no clotting disorder was ever found. My hematologist was only able to conclude that the prednisone thickened my blood and caused the clots. I am on blood thinner for life. My MG is in remission. I still suffer from fatigue, but I am an MG WARRIOR!

Tashana Siller
#IhaveheardofMG

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I Have Learned That Giving Up is Not an Option for Me

I was diagnosed with Systemic Lupus as a young mother, so I have lived with chronic illness and pain for a long time. Through the years, I have suffered greatly and have added many other diagnoses to my list of conditions, some of them both devastating and debilitating. Other than one short stretch of time when I was in complete remission, I do not think I have had a single day when I was free of pain.

During my better days, however, I enjoyed relatively good health, maintained a career that I loved, and participated in hobbies I enjoyed. My husband and I were Ballroom and Country/Western dancers, and even owned our own dance studio at one time. But by mid-2011, my health began to decline, and for two years, I was so weak I had trouble holding my head up, could scarcely turn over in bed, and had difficulty opening my eyes. Speaking, chewing and swallowing were difficult, and I was alarmingly thin at only 89 lbs. I saw three different doctors before I was finally directed to a Neurologist, who recognized what was wrong with me at our very first visit. Rather than dismissing me, this doctor listened. And because she listened, she ultimately saved my life. She ordered blood tests, nerve studies, pulmonary function tests, a CT scan and a deep muscle biopsy; once she had completed her testing, I finally had a diagnosis. I have Myasthenia Gravis, an autoimmune neuromuscular disease caused by a breakdown in the normal communication between nerves and muscles that results in severe weakness. Myasthenia Gravis (MG) affects the voluntary muscles, including those needed to lift the arms, walk, talk, chew, swallow, and breathe.

I began taking Mestinon, a medication that permits freer transmission of nerve impulses across the neuromuscular junction, and while I saw some improvement, it wasn’t quite enough. Because I have a primary immune deficiency, I cannot take prednisone or chemotherapy, both of which suppress the immune system, and I began IVIG (intravenous immunoglobulin) infusions in January of 2013. I now receive these life-saving treatments on a weekly basis.

To tell you the truth, it isn’t easy living with Myasthenia Gravis. And honestly, some days, even breathing seems to take more effort than there is energy to muster. I have grieved for the loss of what once was and for what seems will never be again. That being said, I have learned much through my journey with chronic illness, and I am a stronger and better person because of it. I have learned that whether or not I understand the illness, the pain or weakness I feel at any given moment,

I still can choose HOPE and have an optimistic outlook for my future, however long that may be. I have learned that how I respond to my illness can carry over in subtle (and even not so subtle) ways to affect everyone around me, even when I don’t realize it. And I’ve also learned that how others react to my situation can affect my attitude as well. I think it’s okay to be angry or frustrated or even depressed from time to time, as long as we don’t harm others or linger too long in any one place. It’s too easy for bitterness to take root, and living a life of bitterness is really no life at all. So I have learned that every now and then, I have to do an attitude check.

Every time my husband sits by my side without a dance partner, my heart breaks. Every time we’re in a position for him to get to dance with someone and I watch from my power chair on the sidelines, I cry. BUT…I still hold on to the notion that I WILL dance again, that I WILL be strong enough to walk on my own without falling down, that I WILL feel good once again.

My husband knows this about me, and is my champion. He is the one who is there for me no matter what, taking up the slack when I feel too weak to go on, while understanding that I still need to be able to live. So we plan cruises and we go for drives, and even head to the mall once in a while so he can walk and I can zip through in my power chair, looking at all the cute styles in the windows. Together, we’ve decided that we will do whatever it takes for me to live as normal a life as possible. There are many days when I am too weak to do anything but lie in my recliner and rest. But even there, I am committed to involving myself in support of others and spreading awareness, to reaching out to others that are hurting, to praying for those in my life whom I love and who are going through difficult times. I know what it is like to be afraid that nothing will ever get better. But I have learned that giving up is not an option for me.

As a woman of faith, I believe that God is turning this situation into good, not just for me, but for everyone with whom I come into contact…my family, my friends, even strangers. Most of all, I have learned that neither my identity nor my significance lies in my health status, my career, or whether or not I am capable of doing the things “normal” people do. And I believe this to be true for everyone. We are each significant and have purpose because we are individuals, created by God. We are His masterpieces, intricately and beautifully put together, and nothing slips by Him unnoticed.

Kathie Lea Bradfield

Age 60

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MG Warrior, wife, mother, and “Nah-na”

My Child’s Battle with Juvenile Myasthenia Gravis: Savannah’s Story

I’m telling my story as a parent with a child who has Juvenile Myasthenia Gravis. Let me introduce myself. My name is Felicia Smith, and I too have Myasthenia Gravis. This story is not one that’s easy to write. It’s been a long struggle of things I never wanted or thought my child would have to endure in her life.

It became official in 2014. She was only 12. My daughter had my horrible disease.

I was mad. I was angry. I cried and I felt guilty, so very guilty for giving her a life long sentence that I knew would always be a challenge. Me being sick was one thing, but watching her suffer, watching her while knowing what the outcome of this disease is, was heartbreaking. She had grown up watching her Mommy be sick her entire life. How much more harsh can life be? Why her? Why us? A mixed bag of emotions as a parent, that only a parent who knows the disease inside out could understand.

We had been going to several doctors over the course of three years. You see, she’s been down the road of unknowns herself. The doctors only saw a child who couldn’t explain to them what was wrong. She only knew she felt bad and that’s what she told them, over and over. It became a waiting game for us. We waited at endless doctors offices, we waited in hospital rooms, we waited on tests, we waited on labs, we waited on answers, we waited for our daughter to be a kid. Most of all, we waited on a diagnosis. It became very evident that Savannah was tired of waiting. She dreaded yet another visit, another poke with a needle, another doctor telling her they couldn’t find anything wrong. We would make it to the car and she would cry. She would cry out of fear and anger and so would I. I laid awake at night crying for my child. Crying to God, certain He had forgotten my baby and me. I was becoming angry with Him. I myself was becoming bitter to every doctor and nurse we saw. They treated her as if she just needed to not think about how she felt and try to be more active and gain more friendships.

I will never forget the first hospital stay with her, still without a diagnosis. I was very ill myself with my MG and hadn’t left her side in the hospital. As you can imagine I am weak and as exhausted as she was. I had mentioned to one of the doctors that I had MG, can they please check her because of her symptoms. I got a rapid response. “There is nothing wrong with your daughter, you just WANT her to have the same disease you have. She just needs a better sleep pattern and to be on public school and not home schooled”. What just happened? Were they serious!? I lost my cool that day, I was no longer the complacent mother who was doing what the doctors told her. I was a mother bear, an angry one who was woken too early in the spring. I went into attack mode. I lashed back like I never had before over my child, enough so that we were dismissed from the hospital. I admit, it is not my proudest moment, but looking back, it was the best thing that ever could of happened. We kept pushing. Kept looking, seeking out all pediatric doctors we could. Every single one was a dead end. No one would listen to my thoughts on MG, telling me it wasn’t hereditary that I was over thinking this.

Along the way she was diagnosed with Juvenile Arthritis. I thought I had an answer, albeit not a great one. It comes with its own challenges. We started treatment and still, I saw the signs of MG and mentioned it to her rheumatoligst. He assured me once again it was just muscle weakness from her JA and she needed to build up muscles. I wasn’t happy with his answer. I kept seeing other doctors outside of his care. I finally took her to the retina specialist who had taken a chance on me. After all, what did we have to loose? I said, “PLEASE look at her!” I begged him to give her the mestinon and see if it worked for her too. He gave us a script for a cat scan to check her thymus and for mestinon. Her thymus was indeed enlarged and the medicines were working! A simple CT and a listening ear gave us answers we were desperate for!

We got her into the MDA clinic to see Dr. Weiss. He looked at me and said, “I don’t know how they missed this. I can’t believe all they have put you both through”. We couldn’t believe it either but it was nice to hear a doctor say it.

She had a complete thymectomy in November of 2014. It was so hard watching my baby suffer and go through pain that only I, her mother, would ever understand. She has an electric wheelchair for bad days and sadly good days are still few and far between, but we cling to hope that she will gain remission. So we are back to waiting, but waiting on a different ending. All of this is proof that a mother’s intuition is never wrong. Never stop fighting for your child. Be their voice.

Felicia Smith,

Mother to an amazing and a strong, little warrior with the spirit of a fighter deep down inside.

 

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My Whole World Changed

Myasthenia Gravis came and took my breath away, quite literally. Just shy of my twenty-third birthday, my whole world changed. In the beginning of August 2011, I was running on a beach with a glorious tan, laughing and carefree with my younger cousins. My future beckoned to me, the possibilities endless, my dreams just in sight. By the end of August, I was in a wheelchair, paralyzed in the legs and wondering if I was ever going to walk again. The ensuing weeks were terrifying and exhausting. They were also only the beginning.

MG propelled me through a rotating door of frightening non-stop ER visits and clueless doctors who berated me, ignored me, mocked me, threatened me and dismissed me. I endure endless testing and sardonic questioning that ultimately left me in a place that caused me to question myself, my own sanity. Even after my hard fought diagnosis, I struggled to find a sense of balance. I was overdosed or under-dosed, misunderstood and afraid. Each doctor had their own opinion and none could agree with the other. All held one unifying opinion, however. Each emphatically believed that I was exaggerating, that I could not possibly be THAT sick. After all, Myasthenia Gravis was “easily managed”, right?

I did not learn to respect where Myasthenia Gravis can take you until I was faced with my first life and death encounter, until that agonizing span of time where my life slowly ebbed away as my mother held me choking and gasping in her arms in a small hospital room, surrounded by professionals perplexed at how to help me. Each time a crisis washed over me, I learned anew what fear was, what life really meant and how fleeting it can be.

I learned right then and there the foolish frailty of believing that MG was ever a simple disease for the majority it inhabits.

I will always be a Myasthenic. It quite literally runs through my veins and is in my blood. That thought used to frighten me. While I must acknowledge the hell of MG, I too am given to honor the blessing that it can be. MG taught me that moments matter, that we are not promised the future and that God can bring beauty from the ashes. It has been a refining fire in my life that has brought new depth and a better understanding of my fellow warrior. It has also propelled me into the heat of the fight for awareness, for keen understanding on what MG often is, not what we have so long believed it to be. MG also served to hone my passions I once thought long lost to a rare disease, into a desire to showcase the humanity behind our suffering so that solidarity and hope may shine through.

Myasthenia Gravis is just the beginning for me.

– Rebekah Dorr

Myasthenia Gravis Warrior since 9/22/11

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The Ever Changing Journey of Myasthenia Gravis

Myasthenia Gravis, oh the two words that changed my life when I was 16 years old. I never knew the impact that these two words would have on the life I had planned for myself. I sat there in front of the mirror at 16 trying to do my makeup, wondering why is my vision was doubled. Why was my right eye not moving? I thought to myself, “I must have simply read too much”. I had worked so hard in school, and was in every activity you could think of. I held a 4.0GPA and believed without a second thought that I was going to make a difference in this world. Never did I imagine it would be through my own story because of these two words. Myasthenia Gravis robbed me of so much. I graduated my sophomore year first semester because I went three months not knowing what was even wrong. I just knew I went from normal and healthy to drooling, double vision, facial droopiness, and generalized weakness and not able to chew over a period of 3 weeks.

Never would I have imagined what was going to transpire of the course of the next three months much less the rest of my life. I went to the ophthalmologist thinking that I needed glasses, and had a lazy eye. It wasn’t until he examined me and then raced out of the room and began arguing with the MRI outpatient office to do my scans NOW that I realized this wasn’t me reading too much or studying too hard to keep up with my 4.0 GPA. I finally realized it was something truly wrong that was beyond my control.

I remember the first MRI of what would be many. Four hours in a machine and still no answers. Within three weeks I was drooling on myself, had double vision, and was having a hard time swallowing, along with general weakness, and droopiness on right side of my face. Still, after numerous doctors and specialist I continued to spiral downward. Until one day a doctor passing through Texas Tech University did a tensilon test and finally got a diagnosis of Myasthenia Gravis. I was the first person in my age and sex to be diagnosed in ten years. As I heard this diagnosis and all that it entailed, I remember feeling happy and relieved, but at the same time I was scared. Now twenty years after my diagnosis and many different therapies that worked for a brief time and then failed, I have epitomized what this disease can do to a person. I went through many therapies including mestinon, mestinon timespan, IVIG, and prednisone. IVIG caused me to go into three comas and acquire reoccurring spinal meningitis. I felt so overwhelmed and cheated. I had worked so hard to beat the odds and make an impact in this world.

I am now learning how to live with it at a new stage in a new way. It has steadily progressed and is now affecting my respiratory system. Being intubated and on a vent and fighting doctors over a well established and proven diagnosis and against psychological diagnosis is just part of my everyday life. The medications for this disease are relentless and are even worse than the disease itself at times. The publications that I read are heartbreaking because the correct literature is not out there. True in that the disease itself can kill you but so can the therapies. It is a blind, double edge sword. We are our own advocates and we are together learning new things and defying the odds. Our struggle is real and at times it is through the ugliness of the disease that we learn the true meaning of strength and empathy. I AM THE FACE OF MYASTHENIA GRAVIS. I AM A SNOWFLAKE. I AM A SPOONIE and I AM OK WITH THIS, because this is my life and this disease, through its ugliness, has made me the person I am today.

It has taught me well beyond anything I could have ever learned in a book, on the path that I had planned for myself all those years ago. I will never give up and I will continue to shine awareness on this disease in hopes that my story will not only inspire another snowflake but also let people of the healthcare community and nonprofit agencies realize that this disease is life changing and sometimes life taking. The only thing all of us have in common is the fact that in each and everyone’s stories we bring light to the unknown rare disease and eventually through our struggles and our own perseverance, a cure will be found so that many after us will have the chance to see a cure.

– Genieva H.

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Something Was Wrong, I Just Didn’t Know What

The first symptom I experienced of Myasthenia Gravis was while I was on vacation in August 2013 on a hike of a mile and a half in beautiful 70 degree weather. I was worn out after less than half way through, which seemed odd. I was also having neck problems, having to prop up my head with the palm of my hand when I got fatigued. I did not tell people about the neck problems because I was embarrassed that I couldn’t even keep my head up!

As months went on I had unusual symptoms of fatigue. When mowing my small front yard I would have to stop and rest before finishing. I didn’t understand what was going on. I was 67 years old but in good shape. A year ago, I could have worked all morning without stopping to rest.

I told my general physician I had “shortness of breath” when doing simple physical things. I explained it was a “step change,” a sudden change. He dismissed that it was a sudden change and said it was typical of someone my age with a desk job not getting sufficient exercise and that I should take 20 minute walks after dinner at least 3 times a week. So, I started walking as suggested and really began to struggle. (Note: Telling the Dr. I had shortness of breath was misleading — the real problem was I had muscle weakness which led to shortness of breath. MG is not a cardio-vascular or lung problem, it is a muscle function problem!)

I started to wonder if maybe I had a heart problem. The cardiologist did the full series of tests which showed I had basically a healthy heart, no change from when tested 5 years previously. I was perplexed.

We went on a vacation in April 2014 where we were up in the mountains and I could not walk very far without stopping to rest which I attributed to altitude sickness. The only problem was, I also had this “altitude sickness” at sea level!

My wife and I went to the gym 3 times a week where I did 6 – 8 basic exercises. I would be finished in about 15 minutes but would then have a real struggle with just walking back to the car! I kept saying, “I know something is wrong with me!”

It got to the point that I had to stop and rest when walking about 50 yards from my car to the office door. I had to support my head and neck when walking. My speech started to slur when I tried to pronounce multi-syllable words, and like Porky Pig in the comics, I would stutter and then change to a shorter word! My vision was fine when driving into work in the morning, but would get blurred when driving home after a day at work. I ended up losing about 20 pounds because my swallowing became an issue and I was afraid of choking, so I would only eat half of the meal.

I was masking most of my symptoms because I didn’t want people to think I was some kind of wimp/whiner. Turns out this greatly impeded the diagnosis because the doctor only got a partial picture of what was going on. Another impediment to diagnosis was that I did not know what MG was. If I had heard about it and its symptoms, I might have asked enough questions for it to have been diagnosed earlier.

Finally one morning, I called my doctor’s office and said I was desperate. The nurse said to check into the hospital, which I did. The doctor did these standard checks like having me squeeze his fingers and push up with my legs against resistance. I could show reasonable strength for a short time period but my strength quickly waned, however, that did not come out in these short tests. In this hospital stay my doctor ordered the blood test that led to diagnosing MG.

After MG was diagnosed (June 2014), I immediately had a 10 day stay in the hospital to receive IVIG and prednisone.

I slowly got better. My high dosage of prednisone was slowly reduced down to 15 mg per day, and together with mestinon, I continually got stronger. My symptoms were reduced to where I could eventually walk a mile with only stopping to rest once, as long as I didn’t do it in the heat of the day! My head drooping was minimal and I no longer had blurred vision. My symptoms were then tolerable and as long as I didn’t push it too much my life was fairly close to normal. However, it didn’t last.

About 15 months after diagnosis and treatment my symptoms worsened. It steadily has gotten worse to where now I can only walk about a city block without stopping to rest. When I get tired my legs get really weak and my head droops. My vision get blurred if I read for an extended period.

I just started with Rituxan. I had two infusions (2 weeks apart) in May (2016) and am now waiting to have the next round 3 or 4 months later. It takes over a month to start feeling benefit from Rituxan — hoping for good results!

At least now, I know that something WAS wrong and I know what that something is.

-David Wiebe

Myasthenia Gravis Showed Me a New Purpose

“Ma, I can’t open the car door.” Those words were my introduction to Myasthenia Gravis. As my mom looked at me she saw my eyelids began to droop right before her eyes. Trying to open the car door again, my hands slipped. There was no grip at all. At that moment I was rushed to the hospital.

The tensilon test was how I was diagnosed. Upon the injection my eyes flew open and my hands were strong. I don’t remember anything else that day because I was scared. I was 12 years old and documented as the youngest MG patient at Stony Brook University Hospital in NY. It was 1989.

Fast forward two years. I had a thymectomy. I was 14. Most of high school I was home schooled with so many doctors appointments and being sick a lot.

Time went on but my fears were dwindling as I became more educated about MG. I almost died twice due to complications from MG, but I am still here! Then I realized I had a purpose, to help support others with the same illness.

Now at 41, my symptoms have progressed to difficulty walking, climbing, swallowing, toileting, speaking, basically every human function. However, with God’s love, my husband, friends, and my mg support group, I still push on.

I can’t stay home alone anymore so I go to an adult center, but I’m using my story to help others at the center know they can push through. I don’t know what will happen, but I want my fight to be my legacy.

-Shirrel Miles

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Shirrel and Rebekah at an MG Support Group Meeting

 

One Doctor Took a Chance and Saved My Life

Like many, my diagnosis was not easy to come by. I had traveled down the road of uncertainty, fear and anger before finally being diagnosed with yet “another disease”. I often wondered if this was indeed the one I had, the one that was making my body a stranger that I met in the dark alley that beat me up and changed me forever. I had been misdiagnosed more times than I could count. I rode the crazy train too, being the number one passenger. Especially if you asked numerous doctors who had given me the one way pass with no return. But I kept pushing, fighting, forcing doctors to listen to my anguish and tears.

I almost gave up, until one day I went to see my retina specialist. This dear doctor had seen me through many stages of my undiagnosed illness. The good, the bad and the ugly, he had met all forms of it. He kept saying there had to be more that was being missed. I will never forget the words he spoke to me the day that changed my life. He said “I’m going to give you some medicine. Will you be willing to take it and see if you notice any difference? It’s off the chart, just between us. I’m not giving you a name, I just want you to fill it and try it and call me in the morning.”

I thought sure, what the heck. I don’t even care. Maybe it will kill me. I’m so tired of fighting to find a diagnose that I don’t care if it works or knocks me out.

I had it filled and had my mom watch me. It was an instant change. It was as if I were superwoman! I came from sitting in a wheelchair to being able to move and talk and feed myself all within the same night. What was happening? Was this a fluke? What in the world did he give me? I wasn’t sure what to think. I had my doubts and questions but all I knew is that it felt as if he just saved my life, and I was thankful.

I called him the following morning and was so excited I couldn’t stand it! I relayed the great news. I’m not sure who was more excited, me or my doctor who had tried so hard to help me when no one else would. He had been seeing me twice a month for the longest time. He was my sounding board and sanity who tried to help me figure it all out. He said ” Felicia, you have Myasthenia Gravis. It was a long shot that we tried this and I believe, my dear, we finally have an answer for you. I need you to see a neurologist and have him confirm this diagnosis”.

What?! You want me to see another neurologist? I had seen everyone in the county and they had all written me off and said it was in my head. After all, being in your early 20’s apparently gave me zero credibility in the way that I felt. I was scared to see yet another neurologist, but I did. It was the best thing that I could have ever done. I saw Dr. Weiss with the MDA and he confirmed the diagnosis and was astounded that everyone else had missed this. EVERYONE. I started on mestinon and was scheduled for a thymectomy (major surgical procedure to remove an organ called the thymus gland that is believed to play a role in MG) all in a matter of months. I had a complete transternal thymectomy and was terrified. Scared again of something going wrong and what if they had been wrong and they slice and dice me for nothing? But in January of 2009, I underwent my surgery and came out stronger than I had ever been in my life. After my recovery of course! I went into remission. My life changed forever that year. I had my life back. I could be the mother and wife I had always wanted to be.

Sadly, it all came to a crashing halt when my “honeymoon period” was over. Remission lasted a year and a half for me. I was back full blown with my worst enemy. It’s been a bumpy road since then but I have learned more and I’ve become the person who knows what a real, life-long struggle is. I know that not everyday should be taken for granted. I know that the struggles are real and valid and that I can overcome each day by starting again the next. It may be my reality that I have to sleep for a week straight. Maybe I can’t cook, or my husband has to feed me my meals. Maybe I can’t walk the dog. Maybe I Netflix all day and pretend I’ve had an exciting day when in reality it’s just another day of struggling.

I do. I survive. I fight. I have Myasthenia Gravis. I’m proud to say that. I’m proud I have a name to a disease that almost took my life before I even knew what it was. I’m glad to have a name that ends the battle of all battles- the unknown. Now I just battle one thing. I have Myasthenia Gravis, I will survive and fight until my last breath.

Felicia Smith

Age 36

Wife, Mother, Daughter & Fighter!

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Story edited by Rebekah Dorr