The Misunderstood Reality of the Advocating Patient


Fair warning: this is an editorial piece born of my own experiences and passion. It is not rooted in any singular experience but in an education shaped over time and hands on experience all across the world. This is not meant to be reflective of anything other than my own opinion and is not intended to be taken as an application to all.

I hear this particular phrase bandied about so often that I think I would repeat it in a coma. “The best thing you can do is be your own advocate. You deserve xyz care so don’t be shy in asking for it” and dozens of other well meant but poorly understood iterations. And over the years, I find it increasingly tone deaf. Don’t get me wrong. There is absolute truth in this ideal and I strongly believe in self advocacy!

I also have learned over the years as I’ve advocated for myself for the past decade, and now for others the last four plus years, that the ideal and reality often don’t mesh. Advocacy (be it from the patient or other person) is often seen as a negative challenge from practitioners. (I’m speaking broadly here and with an acknowledgment that this will never apply to all but I am speaking to a majority experience.)

So why aren’t we talking about it?

Doctors, PA’s, NP’s, even nurses and RT’s etc., struggle with knowing what to do with patients like us who don’t fit into averages, studied percentages and easily determined criteria. With complicated and rare diseases like MG, there is a sharply increased necessity for contextual understanding and the ability to humbly stay open when faced with a patient whose disease you know nothing of.

Perhaps greater still is the care provider who has a perception of skilled knowledge without truly having skilled knowledge. This in and of itself is just as challenging as those who are ignorant, perhaps even more so. These men and women up and down the hierarchy of patient care are often the most adamant in refusing to listen to a patient, caregiver or advocate presenting concerns about their triage, dismissal or care plan. They insist they are well versed and refuse to listen, regardless of how official your resources or how plainly clear the research that stipulates the opposite.

These providers increasingly show hostility and retributive action against those who do speak up and advocate, putting the patient in a serious dilemma between the gamble of choosing silence and poor care or advocacy and the strong potential of anger, denial, dismissal, discharge, patient abandonment, false psychiatric diagnosis or dangerous mismanagement

There is also a concerning trend in their difficulty in removing bias when the presenting patient “looks fine” and whose complaints aren’t readily found in initial (and correct) testing.  Lack of salient, primary knowledge on Myasthenia Gravis or accountability for published works and writings have led to extremely unregulated and often incorrect information which is then clumsily applied to the patient who may or may not be in distress.

When the rubber meets the road, reality screams back that the idealized vs received (reality) attitudes are vastly outnumbered.

So here we have a patient community in MG who doesn’t “show up” in your standard triage and vital checks, nor is easily “seen” and often deviates from standard presentation. Particularly in moments of surgery, exacerbation and emergency, this becomes a point of fear and conflict. This often leads to dismissal from the moment triage begins to ER physician evaluation and can carry through into units with bedside care and respiratory therapy intervention, sometimes at the patient’s most critical moments. And when the dismissal, outright refusal of care, disbelief, inappropriate action, wrong medication and misdiagnosis of psychiatric disease comes into play, as it often does, the patient is left to intercede on their own behalf, IF they are physically able.

Well meant, the advice to simply advocate for oneself and seek or even respectfully demand specific care is rarely well met. In fact, part of the criteria for somatoform (psych) disorders, is a patient who believes their doctor is wrong or insists they are really sick.

And in spite of placed channels for seeking out the care you deserve via charge nurses, the administration and even some hospital advocates, it is almost unheard of to see them over throw or challenge a physician’s treatment course or dismissal. (Again, there are always exceptions but I have spent more time than I can say advocating and talking to nurses, charges, hospital advocates, liaisons, floor managers, and administrators of all stripes of importance, and the intended patient protection morphes into physician protection. Some administrators have even laughingly told me, “good luck getting the doctors to talk to you. They don’t even call us back.”).

In fact, it has become so highly politicized within the hierarchy of medicine that other physicians tend to shy away or refuse altogether from the potential challenge of their peers. Second opinions are often riddled with reticence, refusal to contradict or ineffectual action.

What should be a fail safe for patients can quickly and easily backfire and cause clinicians, nurses, RT’s etc., to antagonistically dig in further. And when the tools structured to give patients a sense of protection against these issues are ignored or used against the patient, the original and well placed intention to advocate can turn into a nightmare.

Emotional trauma from such encounters is not on the decline, even as awareness and patient empowerment is being pushed more and more. Patients often fear seeking out the ER or hospitals and ignore critical symptoms due to previous encounters that left them feeling abandoned, untreated, mistreated, bullied or placed in jeopardy.

My long winded point is this…like many things in life, it’s rarely black and white and often doesn’t work out in real life like it does on paper. The idea is not to discourage advocacy. I highly encourage it. It is part of why I spend so much time trying to share information and educate so you feel more empowered when these moments come. But I wish there was intellectual honesty within our own communities and within medicine about what really goes on within the walls of hospitals and clinics.

Encouraging advocacy without understanding what that demands of the patient or their loved ones and the potential negative consequences does not propel us towards a future where real change and positive movement occurs. It instead keeps us in places of antagonism with those meant to treat us.

And while it can be argued that medical staff mean well but it’s just “too rare to expect them to really understand”, I would say that is not applicable to the conversation. Lack of knowledge or those who mean well does not translate into bias, arrogance, refusal to listen to the patient, their advocate/family member/caregiver, pulling care, refusing care, labeling, assigning psych or drug seeking status without exhaustive proof etc…has nothing whatsoever to do with a disease being rare. It’s an excuse that is harmful. Lack of awareness is readily solved. Refusal to stay humble and learn has no excuse.

Perhaps, instead of offering an entreaty left to ambiguity, (after all, advocacy means a great many different things to many people) we can begin to truly empower by teaching when and how to utilize the placed channels of protection, what to do when advocacy is working against you and how to help others help you. Advocacy, if nothing else, is a honed skill, forged over time and is found more often in offense than defense.

Hundreds of thousands of rare disease and chronically ill patients like ourselves fight the same battles of fear of hospitals and ER’s, negative consequences to standing up for yourself, damaging misdiagnosis and assumptions that can follow you every time you need future care. Far too many stay home instead of accessing help because the help we thought would come doesn’t and so we learn to stay away.

It is my hope that intellectual honesty and seeking positive encounters whenever possible will press in new roads that lead to shattered stigmas and bias that harm clinical trust and individual well being. And maybe, just maybe, we will learn to stop uttering “just advocate for yourself” as though it’s a curative without offering up the strength of walking with one another and learning what it means together.

– Rebekah Dorr
Patient and Advocate
Founder/Admin, Myasthenia Gravis Unmasked

A Conversation on Myasthenia Gravis and Exercise

From an advocate’s perspective:

First, let me say that the conversation on Myasthenia Gravis and exercise is a sorely needed one, no pun intended. It remains a controversial and delicate subject as many struggle to maintain stability in their daily life with MG outside of any augmented incorporation of exercise. The community by and large faces a great deal of misinformation as it relates to our weakness and overall stamina in the medical community with too many clinicians and well meaning family and friends telling us that we would feel better if we would just exercise more, inadvertently missing the entire picture of what MG is, how it is embodied, and what such a prescription would mean for a large majority of sufferers.

This latest study (referenced at the bottom of the article), I fully believe, was brought about in an attempt to deal with this hesitation and a topic that is so fraught with misconception.

I will start out by saying that I appreciate Dr. Macko’s validating depiction of MG altering quality of life, often significantly, and I appreciate her endeavor to help bring a certain level of clinical assessment and consensus as a broad basis to help other clinicians foster a potential exercise program that may be beneficial to some.

With that being said, as an advocate, I have hesitations and concerns about this study that was recently published in a neurological journal. To make it a little easier to discuss, I organized my concerns into bullet points.

  • Too broad and poorly applied. Right off the bat, the study cites application to those who are categorized as stable with mild presentations while moderate myasthenics are added in later as potential considerations. What does mild or moderate and stable MG look like clinically? This study fails to correctly and appropriately define this salient premise upon which it largely based its foundation for success. Without a defined consensus of what these terms mean, their discrepancy proposes a potentially dangerous gray area left to individual clinical interpretation that may or may not be appropriate to the Myasthenic.


  • Contradicts itself in the tailoring to a disease that fluctuates (as cited within the study,) sometimes hourly and most certainly daily. For example, if an exercise regimen is developed based off a guided assessment from a skilled practitioner (which I will address that in greater detail in a moment) on a particular day of stability and controlled symptoms and several days later, or perhaps even later that day, the disease manifests differently and the stability from before is now a flare that requires hours or days of rest, where is the application of a tailored regimen and how can it be effective? What day are they tailoring to and how is it possible to stick to this? Is it something that the patient only adheres to on days similar to the assessment? I think this key issue comes back to the poorly defined definitions of mild and moderate MG and stability.

  • Oversight for this, even in more mild and well controlled cases, requires a skilled therapist and clinician to help ensure the proper balance between beneficial exercise and inducement of exacerbation with potentially serious adverse setbacks. My main issue here is finding skilled therapists and clinicians who understand this disease and it’s minutiae well enough to be able to execute such a program safely. As it is, it is almost laughable to think about when you consider how hard it is for the average Myasthenic to find a skilled clinician to care for the disease itself. Impossible? Not at all. Probable? Not highly likely at this juncture in the current relationship between the overall clinical world to MG.


  • Focuses on the probability of sustained stability that is not clearly defined or applied. Stability can be a fleeting principle when discussing MG as efficacy and timing of treatments, clinical skill, and patient response are all wild cards and as the autoimmune component waxes and wanes (as noted in the study from a myriad different sources, some controllable but many not). Even under optimization of environment and overall health, MG is nothing short of unpredictable.


  • Fails to provide a control set of those who are defined by this study as mild and moderately stable who are receiving skilled care and are responsive to therapy who are not in an exercise regimen to see an equitable, nonprejudicial comparison between exercise participants and their controls. This fails to offer a comparable foundation to see if, in the long term, exercise benefits those who are stable enough to tolerate it or if there is too broad an application from a more general understanding of how exercise benefits the body in those who are not struggling with MG.


  • While muscular wasting and atrophy (by-products of the underlying flaccidity inherent to the disease itself) and secondary myopathy (medication induced) is something Myasthenics actively need to guard against, an exercise regimen provides a potentially contradictory ideology in its claim to help dispel fatigue and improve overall function based on the very premise of the mechanics of the disease (i.e. varying levels of muscular fatigue or lack of contraction seen after inducement of changing activity levels from increases in antibody production, changes in nerve transmission as a result of fevers, infection, temperature changes etc., exacerbation from co-morbidities, incorrect medication regimens or poor clinical response, overall nutrition deficits due to fatigued bulbar muscles used to typically chew and swallow safely etc…), which ultimately circles the drain back to the definition of mild, moderate and stable.


  • It fails to aptly define fatigue. Are they referring to muscular fatigue (flaccidity), which is defined by the study’s own criteria as a causation of repeated, sustained activity? Are they referring to the mental fatigue common amongst autoimmune disease and due, in part to the inflammatory process of a constantly fluctuating immune response? Research has indeed shown that exercise boasts great benefits mentally, emotionally and physically and improves overall health but the research across the board gets muddy with autoimmune disease. Without knowing the cause of the immune abnormalities and mind numbing mental fatigue produced in autoimmune disease, generalized applications based on exercise benefit from those outside this criterion is inequitable.


  • I do believe that mild* and some moderate Myasthenics who are well controlled symptomatically, are not at risk for pending exacerbation and do not have a predominance to respiratory and bulbar weakness, will benefit from a highly individualized and carefully executed regimen. The point in this rebuttal is not to say that exercise should be thrown out the window or taken off the table, but to point out the flaws that have been established on too many assumptions, variance and lack of clearly defined clinical presentations.

*(I am defining mild MG presentation as a Myasthenic who is not hospitalized for their MG, is optimized on their treatment plan and does not require more aggressive therapies to maintain stability, is able to tolerate temperature extremes with less noticeable adversity, enjoys greater sustainable activity and occasionally struggles with a temporary flare that is resolved with a day or two of rest.)

My conclusion:

For far too many Myasthenics, (including moderate cases that are able to perform somewhat functionally on a daily basis) routine activities like bathing, dressing and eating, let alone driving, raising children, cleaning, cooking or running errands, take sustainable energy and contractual strength that is often not there or not there in any reliable measure. Incorporate exercise and now you have Myasthenics who are often put In places of greater temporary weakness than before they began the exercise, most likely compounding the very issue meant to be allayed by the exercise to begin with.

For those who are able to exercise and improve overall health, reduce stress and increase stamina in varying degrees through exercise, this is a move in the right direction but the minority response cannot define or imply clinical approaches to the majority without creating a potentially harmful clinical perspective on patient outcome, effort and treatment. Prior to the publishing of this study, there was already in existence a clinical misnomer about patient effort as it relates to overall patient prognosis. Physicians who are treating MG without a solid and capable understanding of the mechanics of the disease, tend to extol exercise as a means of augmented therapy, insisting that it will provide benefit to those who try. Now, there is a published article in a respected journal to further strengthen their approach without appropriate consensus or definition and I am afraid that the interpretation will be rooted in even more potential misunderstanding and poor application.

I appreciate the conversation but not the application of this study.

– Rebekah Dorr
Founder, Myasthenia Gravis Unmasked

From a Physical Therapist’s perspective:

Rebekah has already highlighted a lot of my questions/concerns about the data included/reviewed in this article. But, as a physical therapist who now suffers with MG I have a few issues of concern as well. First of all, please keep in mind this is the summation of a literature review and that the primary conclusion drawn is that there is a need for the development of an “evidenced based protocol” for MG patients in order to determine what type and what level of exercise will aid in being able to maintain or improve their physical functioning. This article is not stating that exercise is what all MG patients need to do across the board and it should not be interpreted that way by anyone. My interpretation is they are merely looking to validate the need to develop a protocol. Protocol by one definition is a written set of detailed instructions to guide us in the care of a patient or to assist in the performance of a procedure. Please note this says “guide” and “assist”. Unfortunately, protocols have allowed the clinical decision making process to become robotic and not the critical thinking of an intelligent human being who is looking for guidance or assistance. Additionally, the article itself acknowledges the variability of this disease, patient to patient, day to day and within a day. This is very frustrating for patient and clinician both, but to me it also obviously contradicts the need for a “protocol” in the first place!

The premise behind the article highlights one of the flaws of our current medical system. Find a box to fit the patient in and then treat them with a list of pre-determined medications/procedures regardless of the specific presentation of the individual in front of you.  I am not arguing that research to develop a body of quality evidence based information about the effects of exercise on the MG population is sorely needed. Not only will this help us further understand the disease itself but will enable us to optimize the benefit of the rehabilitation provided. However, this is an extremely daunting task if you truly consider the number of variables the myasthenic population presents with and the fact that this is a rare disease and by nature offers a limited population of subject with similar presentations to do the studies on. Several of the articles cited in the references were conclusion based on the review of surveys of self reported activity levels and quality of life, or they were case studies of very limited or specific patient populations. This is not the type of information that I would use to draw conclusions about what is appropriate exercise recommendations for the MG patient. Unfortunately, it will take years and money to develop a body of quality information and this will allow many practitioners and patients to continue to flounder with the issue of what to do now!

I believe the focus needs to be laid on the education of the medical community as to the nature of the disease itself. Doing this will enable the medical/rehabilitation practitioners to apply the skills we were taught to the specific patient in front of us, NOW. As a therapist it is my job to evaluate the entirety of a person and apply the principles of exercise, tissue mobilization, energy conservation, body mechanics, posture, etc to develop a plan to improve that patient’s functional status without causing further harm. If I am unfamiliar with a condition my patient presents with, I either educate myself about it or find someone who knows. It is truly sad that medicine is now so driven by the need for evidence based research and protocols to tell us what to do and to provide the validation so that insurance will cover it. The thought that unless I am provided the research that says my patient should do 3 reps instead of 10 per set that I can’t determine that for myself is very disturbing. Not only that, but there is no way you could develop a protocol of specific exercises to address this population as a whole. This is not a surgical procedure with defined healing constraints or mechanical limitations that would outline the treatment for you. This disease requires knowledge of the disease not a list of pre ordained “guidelines” to tell you what to do.

Lastly I must say we need to redefine what the word “exercise” means. For nearly all of us it conjures up tight clothing, a gym, x sets of x, sweating and feeling the burn. I will just tell you there were many times in this process that getting make up on and hair fixed felt like a P-90 X work out to me!!! Individualized therapy treatment could easily lead to an exercise prescription for things like: take the long way to the bathroom using your rolling walker at least 2 times per day, stand with your arms out in front of you for 10 seconds before you sit in a chair, each time a commercial comes on pump your feet up and down until the program comes back on. I swear to you this is where I started myself. Things this simple can be exercise programs when you are significantly debilitated But keep in mind, I would not prescribe these type of exercises for an MG patient who is still working, getting their own groceries and doing their yard work. I understand there are folks that function at that level and for them I may prescribe the 3 sets of 10 of X, Y, Z exercises and see how they tolerate it. There are MG patients who are stable enough to run 5K’s, half marathons and more and their exercise program would be entirely different from both of these. If we (medical practitioners and patients alike) would step out of our need to have uniform treatment protocols for diseases and humans that are not uniform, a lot of this issue could be put to rest!

I do want to specifically address the concern Rebekah raised about a program being developed based on one presentation and the next day the patient is different and how do you now apply that program to the new status. Part of any treatment plan is educating the patient on the “what if’s” of the situation. If the patient has been dealing with this condition long enough they may have been able to identify patterns or trends of how their symptoms fluctuate or present, i.e., more upper extremity, more lower extremity, swallowing, respiratory etc… I would expect any good therapist to work with the patient to take this information and develop an “if this then that” addendum to any treatment plan. If there is not an identifiable pattern to presentation then the therapist and patient, together, should develop the plan in a way that allows the patient freedom to alter as needed and still have a level of achievement and continue to move them forward to a goal of improved function. Even if that means do nothing. Just as I feel the need for clinicians to rely on our critical thinking to make clinical decisions, patients need to rely on their critical thinking to take what instructions/information we are given and determine what is best for their particular situation.

– Erin Brantley PT, CLT
Study referenced:

“Grieving The Person I Was Before Chronic Illness” – The Mighty

Grieving the person you were before your chronic illness is a normal process.

A great article about one person’s grief over the person she was before rheumatoid arthritis. I believe the article applies to most if not all chronic illnesses. I can definitely relate to it.

Every Day I Battle Myself

In 2008, my smile fell. I had a new baby, a four year old, an Air Force husband deployed to the Middle East, and a doctor that informed me that I had Bell’s Palsy due to stress. Vain as I was, I took a deep breath and moved on with my life, just, without smiling. I made fun of myself. I made stupid faces in pictures. I learned to not let it bother me…much, anyway.

When my husband returned home, the entire family packed up and moved from the mountains of North Carolina to Gulf Coast of Florida. I joined a gym, made friends, my oldest child started school, and I had a wonderful house in the middle of a wooded area on a beautiful bayou. Life was good, yet something was off. I was always tired. I chalked it up to aging, motherhood, and the heat. The fatigue worsened. I was struggling with mundane tasks like scrubbing the glass top stove and washing my hair. It was during a Zumba class one day that I realized that I didn’t have either the strength or the coordination to continue. Something was very, very wrong with me.

This begins the period of time that every autoimmune disease sufferer is familiar with: visits to doctors who half listen, tests for everything that they think might be wrong that come back negative, and finally the ultimate suggestion that this problem is in my own head. One doctor called it depression, another one suggested that I spend three hours a day on a treadmill. It was demeaning and frustrating.

We moved again after two years. The fatigue lightened up and I thought, okay this was some illness that passed that they never discovered. Then the eye problems started. I couldn’t see half the time. I would tell my husband that I’m not sure if I’m exhausted or if my eyes are just so tired that I feel exhausted. Of course, the eye exam said I had twenty/twenty vision and all other tests were negative. I began to doubt myself. This endless negative inner dialogue kept me awake at night. Nightly sleep loss compounded over weeks then months. I slipped into a funk that was difficult to drag myself out of.

We moved again, this time to Colorado. Best move ever. I had a period of time where, even though I was always tired, I felt normal. I lost weight. I hiked mountains. I even smiled my crooked smile. But it crept back on me. In August of 2014 I felt the fatigue, the eye strain, the inability to use my hands, every little thing hitting me again. Something new, my right eye was drooping. I went to see my doctor, who didn’t hesitate to refer me to a neurologist. I was in his office for fifteen minutes before I heard the words Myasthenia Gravis. Testing still had to be done but there it was, my tormentor.

I was relieved. I was actually happy about being sick. I was not crazy. I also thought, six months maybe a year of pills and I will be back to normal. For a while (despite my feelings toward the prednisone) I did very well on the medications. My smile returned. I felt better. I was so confident in my complete recovery that I told very few people that I was sick. Why share? I was going to be fine.

August 2015, I returned to my home state of South Carolina for a two week visit. It was very hot, very humid, and the entire trip was very stressful. By the time I returned to Colorado, I was ill. I feel like I’ve been in a deep hole since then. I started the IVIG, my steroids were upped, and I now have meds to manage my anxiety. Every day I battle myself. I want so many things for my life that I cannot have right now. I don’t know when to push forward or when to rest. I have crippling moments of self- doubt where I feel like, a burden on my family. I worry about people getting tired of me being sick because I’m already tired of myself being sick.


Our next move is in four weeks after three years in Colorado. We’re headed to Omaha this time. I already have an appointment with a specialist at the University Of Nebraska. MG is his thing and I have placed great hope on this move. At my core, I’m a dreamer, a positive person. Sometimes, that inner truth is hard to hold onto but it’s still who I am. In the harshest moments, I tell myself that it’s going to be okay, just not today. Meanwhile, I’m educating myself. I’m learning about my illness. I’m becoming an advocate for myself. I’ve opened up to the people who care about me to let them know what is occurring in my life. I’m still learning when to ask for help, to communicate when I’m struggling, but everyone in my life has been amazingly supportive. I’m not alone. I am building strengths that I can tap into when I’m victorious over MG.

– Meredith Tournay


Patient Information Packet – Read or Download

An excellent resource written by Rebekah Dorr at MG Unmasked, this packet contains pertinent information about myasthenia gravis and how it pertains to patient healthcare.

Click the link below to view the PDF. To save, right click the link below and click “Save Link As” or “Save Target As.”

Comprehensive Patient Information Packet

Myasthenia Gravis Has Changed Everything

The first time I heard the diagnosis Myasthenia Gravis it was from a local neurologist that did not believe in me or my symptoms or that I had Myasthenia Gravis!

About a month earlier I spent a week in my local hospital after loosing my ability to walk one day at work. I had been noticing other strange symptoms but never put them together. I was working full time as a teacher’s assistant to students with emotional and behavioral disorders. The job was intense, you had to think and move fast!! Students questioned me why my hands were always shaking, why was I not playing at P.E. anymore with them. Why was I walking so slow, why was my voice sounding funny? Children pick up things very quickly and as I was dismissing my notable symptoms, my students kept asking questions. I had previously had 3 back surgeries including a spinal fusion, so I contributed my leg weakness to ongoing issues with my back but it did not explain why my arms felt so fatigued or my voice getting hoarse. My symptoms progressed to the point where they could no longer be ignored, I needed answers!

I was admitted to my local hospital and had many tests that did not reveal any answers to explain the myriad of symptoms I was experiencing. I was seen by the neurologist on call at the hospital who told me he had no idea what was wrong with me and quite frankly he made it clear that if more tests continued to come back negative, that meant it was all in my head!
I remember the feeling of despair that a doctor refused to believe me, that he dismissed me!

I was discharged to a rehab facility where I received OT, PT and speech therapy. I couldn’t do anything for myself without help. I feared for my future. I did receive advice at the rehab center that looking back probably saved my life. I was told to find a research hospital and a specialist who may help me with a diagnosis. I did just that, however the wait time for a new patient was significant so I returned home with therapists visiting me helping me to use my walker and adjust to the normal daily living skills that we all depend on.

I had a follow up appointment with the neurologist that had seen me at the hospital. I told him I was waiting to see a specialist at USF in Tampa. He made a call to my new specialist from his office and still claimed he had no idea what was wrong with me, if anything at all!! A few days later he called me and said he spoke with the specialist I was waiting to see and she wanted me to start on Mestinon while I waited to see her as she suspected Myasthenia Gravis. He proceeded to tell me that he believed I did not have MG and did not approve of giving me the medication but complied at her request.
It was then that I started reading about Myasthenia Gravis and everything came full circle. There it was, in print, all my symptoms!! I took the medication and it helped but there was no dramatic change.

The day finally arrived, I got to meet the specialist Dr Lara Katzin from USF in Tampa, a neuromuscular specialist who only treats MG and ALS patients. As soon as she started her exam, she said she knew for certain I had Myasthenia Gravis and unfortunately had several patients like myself who had been dismissed by other doctors. I wanted to rejoice, not because I had a disease, but because I had an answer, an explanation that I was not crazy and a Dr that believed in me!!

It took a SFEMG to confirm my diagnosis as my blood work tested negative for the MG antibodies. I was immediately started on IVIG treatment in the hospital. I was very sick from side effects in the beginning. I eventually switched to plasmapheresis treatments, 5 days every 3 weeks. I was promptly scheduled for a thymectomy (removal of the thymus gland) as my Dr wanted an aggressive treatment plan to hopefully minimize some of the disabling symptoms with Myasthenia Gravis.

My particular MG is refractory, meaning I do not respond well to commonly used therapies. I was unable to continue working. I missed my job and my students, but I became focused on recovering from the dramatic affects of Myasthenia Gravis. It’s been over 3 years now, and MG still controls my life as my abilities are reliant upon my treatments and how much activity I can do.
I have spent many, many days in the hospital. I have tried lots of medications. I have held such high hopes of better control over my MG and even remission!!

Myasthenia Gravis has completely changed everything in my life.

I have to prepare differently now when we do things as a family, work around my treatment schedule and bringing the wheelchair, keeping me in the shade and a place to rest if I need it. I cannot just get up and go anymore, my independence is slowly slipping away and I fear how long my body can endure all these treatments as I tire very quickly these days. I’m grateful for a wonderful Doctor, a caring nurse for IVIG, a loving and supportive husband and 3 children who love me despite the disease and some missed events over the last 3 years.

I’ve always worked to help others, my joy comes from doing for others. MG awareness became my passion to give me the opportunity to help other people fighting this disease like listening to a parent who needs support as they witness their children struggle or sharing advice about treatments and what I have learned. If I can make a difference in someone’s life by sharing awareness then it’s all worth it. There are many times when I have felt very alone because no one has ever heard of MG, which is what inspired the hashtag #IhaveheardofMG

I do not know what the future holds, as my disease process seems to be getting worse.

I am still adjusting and learning to live in the moment and to be grateful for my family and the support of the MG community. MG is a very lonely disease because people have difficulty understanding something they know nothing about. I didn’t know about the disease either until it entered my life.
My hope is that patients in the future have faster diagnosis, a doctors trust and knowledge, better treatments and of course a cure! My hope is for public awareness so that an MG patient is not left feeling alone and isolated and that people can recognize and empathize with a person struggling with MG. I want everyone, everywhere to one day say I HAVE HEARD OF MG!

  • Sandra Hardin



I Didn’t Take Myasthenia Gravis Seriously

I was diagnosed with Myasthenia Gravis at the age of fourteen.

When the doctor first told me I had MG, I didn’t really take it seriously. I thought to myself “at least it’s not cancer or a brain tumor”. When I got discharged from the hospital, I didn’t take take my mestinon like I should of; I only took it when I felt like I needed it.

A year after my diagnosis, I became seriously ill. I got sick with pneumonia and that’s when my MG became more serious for me. It was also my first encounter with intubation.

That was my wake up call.

That’s when I knew I had to take care of myself, when I started taking all of my medications as directed. I’m now twenty-four, and in the ten years since my diagnosis, I’ve been intubated thirteen times, and been hospitalized many, many more.

I now have a healthy respect for the seriousness of MG.

I’ve gotten my thymus removed, experienced plasma exchange and IVIG (which caused aseptic meningitis), and most recently, I’ve started chemotherapy. Chemo has helped keep me out of the hospital for almost a year now. Several years ago, I had a port catheter placed so I could get plasma exchange. It wasn’t until last year when I began chemotherapy and went through four doses, that my catheter somehow became infected.

That infection almost cost me my life.

I wish I could say that was the only time my life has been endangered with MG.

My journey with this illness it has thought me not to loose faith or take anything for granted.

Even though everyday is a battle just to make it through the day, it has taught me to appreciate everything. Before I got diagnosed with MG, I took for granted everything I did, like showering, changing my clothes, eating, walking around my neighborhood and talking. And now, I cherish every single thing I can do on my own. Even though at time’s it’s not much, it is a victory. I thank God for waking me up the day’s that I have and even more when I wake up with energy wanting to do something. I may appear normal and my behavior may look “lazy” or fake to some but inside, my body is literally fighting itself and it takes everything I have to fight back.

I have a serious illness and it’s called Myasthenia Gravis and I will beat it!!

Becky Garcia


I Just Wanted Feel Be Human Again

I have always had a droopy eye lid, even in my elementary school years, but back then it was called a lazy eye. As time went on, I realized at certain times I would have a really hard time breathing but when I went to my doctors, I was just told it was “nothing” because I always had a pulse ox of 99%.
I have always seemed to be clumsy and I can remember my parents often saying I could trip over the flowers on the carpet.

In my early forties, I had a stroke. I had just moved to Georgia and knew no one and definitely knew no doctors. I was assigned a neurologist who was an older gentleman and this is the only time I will refer to him as that. After I got out of the hospital, he placed me in a daytime rehab program for physical/speech/ occupational therapy. I had PT in the morning and OT almost immediately after lunch where I would be placed on the stationary bike and collapse every time. The neurologist labeled me as “lazy, menopausal and possibly crazy” and removed me from the program. I ended up spending almost two and a half years bedridden.

This was deeply humiliating to me as I had an aide come in the mornings that I was dependent on to make me coffee and take me to the bathroom. Sometimes she didn’t show till noon time which meant medications were late, I had no coffee and there was lots of pain from not getting to the bathroom. Then a night time aide would come and luckily she was wonderful to me.

Every time I would fall or have a really rough time breathing I would head off to the ER praying someone would know something but I was always met with dismissal. The neurologist refused to come and evaluate me and would insist I was seeking attention. The ER doctors grew tired of seeing me and were not very nice. I had decided to do a living will, checking off the block for a DNR (do not resuscitate).

A member of my church had the same neurologist I did. She had all the signs of MS but this “wonderful” doctor also wrote her off as being hysterical. Luckily for her, her husband was a pharmacist at the hospital where this neurologist practiced. He had to beg the doctor do a spinal tap on her. The doctor finally agreed and told her the test came back negative even as she worsened. However, she was able to get in with a neurologist who was well known and is difficult to get an appointment with because she was just that good. The next time I had to go the the ER, I went to Candler Hospital where this new neurologist was on board. I requested her care and God was with me in she walked. There she was, the lady who was about to set me up with an amazing team of doctors and actually diagnose me with a week! Amazing, isn’t it, the difference between a doctor who listens and one who seems to think females are hormonal and hysterical. I can never have enough thanks for Dr. Julia L Mikell who has retired now and it breaks my heart. But for ten years she listened as I was panic stricken and became so angry because I just wanted to be human again. She always listened, and was so compassionate and caring.

I went to her unable to take one step on my own and within months walking on my own. I went for so many hospital stays in a year I could have changed my address and now my last plasmapheresis was November 2014! I still have rough days but I can recoup. I have learned when I need to call the doctor and when I don’t. I don’t panic when I have a flare but I do get madder than hell during a flare. I hate losing control. Life with MG sucks.

– Cindy Milloy