The Long Road to Myasthenia Gravis Diagnosis

A Myasthenia Gravis patient’s 20 year trek to get a correct MG diagnosis, including examples of misdiagnosis, descriptions of diagnostic tests, and personal recollections of dealing with the process.

Getting diagnosed with Myasthenia Gravis was a long, frustrating journey. My official diagnosis was brought down in 2009, but only after visits to a myriad of doctors and a lot of heartache.  From neurologists, to endocrinologists, general practitioners, psychiatrists, counselors, and even a disastrous visit to the Cleveland Clinic, there were many trials and tribulations in my Myasthenia Gravis diagnosis story.

Early Symptoms

Now that I have a solid Myasthenia Gravis diagnosis, I recognize the symptoms easily. In hindsight, I believe I had been suffering MG since the late 90’s. That is presently about 20 years ago. My get up and go had just got up and went. I often had a puzzling symptom where I would suddenly lose my balance out of nowhere when standing still. I chalked it up to inner ear problems, and tried to make a point of being near something to lean on when standing. I knew to expect a pinball-esque trip navigating through crowds. Once an avid walker, I became more and more fatigued. Already then, although I had never been a fan of warm weather, dealing with Virginia Summers had begun to feel like death. I began to limit my time outdoors, much to the chagrin of friends and family.

My vision had gone to pot, as is shown by the painting below, which at the time seemed sharp to me. It was one of my more crisp images from the period and is even sharpened a bit in photographic editing here. Happily, this is a popular piece of mine.

Siskin’s Venice ala Moi

Another example of myasthenic blur is represented by this photograph from September of this year, which I perceived as sharp at the time. The body and the brain have an interesting way of compensating. That’s all party of a typical MG diagnosis story.

I thought this was sharp. Myasthenia Gravis
Looked Sharp! Yup. MG day.

Already in the 90’s, long before my Myasthenia Gravis diagnosis, driving had become a real problem due to visual anomaly. I managed getting around town, but anything at highway speeds was a game of strange, nerve wracking blurriness. I kept passing on the highway to a minimum. My peripheral vision was shot. It almost seemed like tunnel vision when in motion. I now know that it is probably a good thing I did ask for help with transportation. I was very lucky to have assistance.

Now, in 2018, I do not drive at all after several incidents of leg muscles not cooperating while behind the wheel. There was a startling, loud, but non-damaging collision that was viewed as intentional by the other driver, sitting innocently in her new car behind me. I was parallel parking, and hurtled into the parked car during the last reverse move. I meant to hit the brakes my leg didn’t move to the right position. My intended brake force became acceleration, and the resulting crunch echoed through the street. How humiliating to be outside the shop I was about to do business with for Melasdesign. No doubt stress and anxiety had weighed in here. The other driver was livid and only ceased attacking me verbally after an onlooker came from inside an establishment to defuse the situation. Additionally there were several close calls involving getting said leg to apply breaks in traffic. After that I hung up my hat.

False Conclusions

Adding to the puzzlement in the search for correct Myasthenia Gravis diagnosis were the distracting health problems I already had. It seemed to make most doctors throw up their arms in disgust that I might suggest something more was up than what had already been diagnosed. I was sedated by psych meds for major depression and PTSD, which contributed to severe weight gain (and yes, they do increase appetite).

I suffer hypothyroidism. My endocrinologist finally found a happy balance of Synthroid at .3 mg after much experimentation. Later, a veteran hospital nurse saw the level and said it was the highest dosage of Synthroid he had ever seen. My Vitamin D values were low (a very important MG factor). Sadly, starting from day one my medical rap sheet is a yard long. A doctor recently expressed dismay upon reviewing the list during a check-up, saying I’ve “been through enough.”

In the new millennium, things got especially grim – an especially bitter chapter of my MG identification pre-story. I had to have emergency gall bladder surgery. I feel blessed that the anesthetic did not cause  complications, as special measures are required for MG patients. Employment became physically very difficult, adding to hanging on by a thread mentally from the stress of continually pushing through illness, and being forever treated by doctors (along with other, closer people) like I was “just crazy,” seeking attention, or just plain lazy.

Regarding all of this: It’s never been a goal of mine to fake illness, and I am offended by people who say they are “jealous,” when I “get to stay home.” They take so much for granted. Even this blog is meant to be informative, more than a journal of “aches and pains.”

A Telling History

By the early-2000’s I could hardly move off the couch at home. I was still a long way from the Myasthenia Gravis diagnosis. At work, I used the break room couch intermittently for naps. My staggering depression became debilitating. I deal with the condition, a PTSD diagnosis, extreme anxiety (and variables thereof) to this day. I will not go into that here, other than to say I suffered early traumas and got caught in many other bad situations throughout the years. Through not recognizing abuse coupled with horrendously low self esteem and lacking knowledge of a person’s basic rights as an individual, I repeatedly wound up with manipulative, toxic people in my life.

This history and psych diagnosis is a monster to deal with and greatly limits my normal functioning in society. These stressors greatly effect myasthenic symptoms. Many patients with an MG diagnosis deal with depression. The link between childhood trauma and later Myasthenia Gravis is examined here. Through the combination of all of this, I broke down completely and had a decade of sheer mental and physical hell. The term “basket case” was once aptly used by a counselor.

Then there’s my mystery illness link to MG: I was sick for a year in my teens with what doctors at the Medical College of Virginia declared to be a “self limiting unidentified virus.” It was said to be similar to the Epstein-Barr virus, to which an MG linkage has been found. I will write more about that in a future blog entry.

But Wait!

There was a glimmer of hope when a hometown neurologist decided to send me to the Cleveland Clinic. I in no way expected a Myasthenia Gravis diagnosis, but I had hope something would finally be figured out. When I made that appointment I was at wits end. I had a gut feeling that neurology was the right direction. I was also having strange pain and odd sensations in my head (which were not MG related). At that neurology appointment I had trouble explaining more than the abstract notion of feeling terrible. I did not understand my symptoms enough to describe them.

During the examination I had a limp, which I had never noticed. The doctor picked up on it. This is still a very typical symptom of mine. I was and still am so used to living with symptoms that they do not always register consciously. This initial neurologist ordered an MRI. The only thing I remember specifically about the results was that it was said to show some hydro-encephalitis. I still don’t know what in the world that was about, and nothing has been said since. I was off to the big guns.

Because I might as well have been dealing with this guy.

A Jerk with Credentials

During the Cleveland Clinic scheduling, I was asked if I would agree to seeing a doctor’s assistant. I thought and responded “only if I must.” I felt this would leave the decision open to the hospital, but express my preference. I was exhausted after all of the dead end streets and was trying to stack the cards in my favor. My dearly missed, late and long suffering mother flew with me to Cleveland.

Much memory of the visit is blocked, as is wont to happen with bad experiences. I just know that when I saw the doctor (who I suspect was not happy about me specifically wanting *him* that day) started off edgy, and then flew into an utter rage when I had a hard time naming specific symptoms. Fatigue and feeling awful were apparently not a big enough complaint for this clinic, although in hindsight the Myasthenia Gravis diagnosis definitely was. He yelled and cussed loudly, “why are you here if you can’t even name your symptoms??!?!?!?!?!?” I wish I had heard of patient advocacy at the time.

I was terrified. A doctor who has it in for you is not a good thing. I had been so anxious about the appointment that I had made a graphic of key points the referring neurologist had brought out. That was in case I didn’t have the courage to speak. It was daunting. I suppose that didn’t set well, or maybe this “top doctor,” like most others, only saw the face value of a depressed, fat woman with her mother and made up his mind. I will never know.

I quickly ran out of the room to the bathroom and broke down and sobbed in relative privacy. I guess my limp wasn’t exhibiting that day. Maybe nothing was. MG is not constant or consistent. It is ever-changing and in many ways unpredictable. It is unique in every patient and therefore nicknamed “The Snowflake Disease.” That’s another reason diagnosis can be so difficult. Afterwards at the Clinic, I saw other supporting doctors who, from their recommendations, also concluded that I was simply fat and “mental.”

Riiiiiiiiight.

Yup. (What I should have done.)

Many people close to me were incredulous about my experience. I guess at that point I was so used to folks coming up with the wrong conclusion about me in general that I was somewhat numb and resigned to it. The hard thing is convincing yourself not to internalize these nay-sayers. It’s important not to lose yourself. That in and of itself is a special Hell.

The following years were a downwards spiral of continual doctors’ appointments. The Myasthenia Gravis diagnosis was still the holy grail. None helped my fatigue and underlying symptoms. As wonderful as exercise is, it is not always the best recommendation when symptomatic for MG. It was the number one doctor recommendation. I tried my best, Virginia Summer or not. I scraped and scraped by. When I did manage to get up, I spent most of my time at the computer, trying my hand at computer graphics – less physical than painting or my beloved textile design. It’s so important to have an activity to distract oneself with – some way to look “out” and “ahead.”

A Diagnosis, At Last

Somehow, by sheer providence, I met my husband online as the decade started to wane. In the process of moving to the DC area I had still employed my hometown psychiatrist who was also a neurologist. I’ve been through enough terrible medical experiences (on two continents) that changing doctors is daunting. Near one of my last appointments with him I told  of often waking up seeing completely, widely separated double. I love my husband, but am not sure I want to see two of him. I mentioned this to my psychiatrist, and he said to go to a neurologist and get a scan.

I decided to make the move to find a doctor in Northern Virginia. After an MRI showed no brain tumors, or the like, I was tested by my new neurologist for a possible Myasthenia Gravis diagnosis. He proclaimed it “was a leap.” I had never heard of the disease, so it didn’t mean much to me. I thought it was probably just another mundane item for my medical rap sheet. The leap landed solidly. The blood test for MG was positive. I was nearing a diagnosis.

An EMG/Nerve Conduction Study was administered on the day my blood had been drawn. In this test, your extremities get shocked in quick procession to measure nerve fatiguability. See a video of the process below. I do not endorse Hattiesburg Clinic, who may be perfectly wonderful. I am using the video only to illustrate the test procedure.

The test wasn’t pleasant, but also not excruciating. It was just kind of an odd, fast, repetitive feeling that went on for about 40 minutes, by my husband’s assessment.  I did my best to mentally zone out during the process. The blood test that followed that day was easier, but costly.

The next step got relinquished by my doctor to a neurologist at Georgetown University Hospital. He has locally been called “The Myasthenia Gravis God” by yet another neurologist I visited. Hmmmm. I can’t help but notice I’ve named 6 neurologists in this article alone. Getting the picture? My doctor had been on the fence as to whether to get me to do a single fiber test for additional verification. Thankfully, Dr. “MG God” was conservative and said the blood test would do. I was very relieved. The single fiber test sounds awful to me. Think of the above test, but with a metal fiber inserted directly into a muscle (from what I have read).

I finally had a correct Myasthenia Gravis diagnosis.

Why didn't I think of that - Myasthenia Gravis
Or better yet, why didn’t any of my previous doctors????

The Next Step

It was quickly decided that I should have my thymus out. At the time it was still a somewhat experimental notion that has gained ground in the past decade. The thymus is a gland in the chest that usually shrinks to a mere nothing after puberty. MG patients often have an enlarged, tumorous thymus. It is suggested that having it removed improves the patient’s chances of not progressing to worse symptoms. A thymectomy can even promise improvement of current symptoms, even into remission. I was once again lucky for having gone to Georgetown University Hospital for all of this, because there was currently a surgeon spearheading endoscopic thymectomy surgery, much less invasive than the other option of trans-sternal thymus removal. She helped pen this paper on the subject.

Myasthenia Gravis Treatment - Endoscopic Thymectomy Scar
Scar from Endoscopic Thymectomy, 9 Years After Surgery

The operation went well, and I hear the scar looks great. I ended up staying one night for low lung capacity after the lung collapsing process for the procedure. I’ve never been one to bounce back quickly. Most people think I’ve had thyroid surgery, but the scar is actually a good deal lower and wider than would have been caused by such. I started on a regular regimen of Mestinon, and everyone was happy. So far the Myasthenia Gravis diagnosis was in the “very treatable” realm.

MG patients: If you want to have fun, keep track of how many people can actually say “Mestinon.” Have further verbal adventures with the generic “Pyridostigmine Bromide.” Hey – You have to get your giggles where you can.

Along the way I switched to “The MG God” for my regular check-ups. It’s a bit of a hike, but this doctor has never kept me waiting 2 hours after a silver covered platter got rolled in for him to sup on, while reception mumbled things along the lines of “he’s doing it again.” Nor has the current neurology staff ever left me waiting in a room, forgotten, after the doctor has long since left for the day. Ahhhhh yes. Fun times.

A Welcomed Hug

I did show improvement post-thymectomy, and my husband and I were able to have some grand adventures. I even got a huge hug from an artist idol, Isaiah Zagar, when we visited Philadelphia’s Magic Gardens – The Gardens are an affirming and inspiring location of respite for me to this day.

Zagar saw me with the very fresh scar and was impressed that I’d made the trip. It was like unexpectedly stumbling on a dream in the middle of Philly, when we happened upon the South Street location. We did not know it was a lot open for touring and wondered what gnome or wizard might live behind the gate. For me it was art therapy and an illustrating experience of how I strive to forge forward instead of crying in my soup. Years later I showed this master my portfolio, and he sent a very kind letter with a drawing and the encouraging words “Keep on keeping on.” That’s where things stood for about five years. But not all good things last.

Please subscribe, for my continued story. Read about my Myasthenia Crisis experience here. It is what inspired me to start this blog. I welcome your comments and questions.

Myasthenic Crisis – A Personal Recollection

A Myasthenic Crisis Story

On May 1 I had my first ambulance ride. I certainly believe in making it a *real* May Day. Fortunately, the fine crew of Fairfax County EMS did a wonderful job in keeping a terrifying situation calm and getting me to the hard working folks at INOVA Mount Vernon ER before I slipped all the way into the great beyond. I was in myasthenic crisis.

Living with Myasthenia Gravis - Crisis Emergency

A Somewhat Rare Disease

I have Myasthenia Gravis, and it was catching up with me quickly. You see, I was lucky to respond to relatively minimal treatment for years, since being diagnosed in 2009. Well, minimal if you count having your thymus removed as “just a thing,” and obeying the P’s and Q’s of living with the disease.

I somehow find it amusing that needing to go to the bathroom might’ve saved my life. It was the reason I woke up. I was dismayed to find that I could just barely talk, couldn’t move, but very thankfully, had just enough strength to tap my sleeping husband on the back and mumble “Houston, we have a problem.” The myathenic crisis patient is helpless.

Help on the Way

The EMT arrived very quickly, oxygen and resuscitation equipment in tow, necessary devices for treatment of myasthenic crisis. The team navigated the course of loading me onto a stretcher and then down three flights of steps (sorry guys!) into the ambulance. I was asked how I deal with living like this, up so high. It had never been quite that bad before! Otherwise I’m a pretty determined (and possibly stubborn) cookie and hadn’t let difficulty with steps at varying degrees stop me. I was ushered out to the light of dawn and sped to the hospital. I was extremely grateful for the EMT’s help in rescuing me during myasthenic crisis.

My fretting husband followed along in his car, and we left our terrified pup at home. She’s unfortunately very accustomed to me being sick, but not to a hoard of dark-clad figures coming by when we should all be sleeping. As a matter of fact, she took the whole thing very personally and didn’t want anything to do with me for days after I got back home. I promised her I’d avoid further myasthenic crisis as best as I can. She has since forgiven the traumatic event.

During MG crisis, patients can (and possibly often?) remain lucid. I heard everything that went on. Whether the eyes cooperate and provide decent vision depends on the incident and the person. I might’ve seen a total blur, or double vision to varying extents. My eyelids might’ve refused to open at all. This time I could keep my eyes open for decent periods of time and keep up with everything. I cannot imagine how much more terrifying I would’ve been without vision.

A Crucial Question

I figured the best thing was to stay calm, because nothing will lead down the wrong course as quickly as being written off as a panic attack. I had been in the ER before in more minor stages of myasthenic crisis and knew the drill. MG symptoms also worsen with stress, and being misunderstood is always stressful for me.

I took this golden opportunity to ask my EMT caregiver whether the fire department does drills at a certain time on Summer nights. Even though I doubted it, my husband and I noticed recurring sirens at 9 pm each night for a while. I like to take advantage of the opportunities that present themselves, and have a long tradition of asking the question never asked before. This earned a recorded comment during stats notation that I was “very amusing.” If I’m gonna go, I might as well keep my sense of humor. Sometimes it’s the only thing you have to hold on to.

At the ER my neurological strength was barely 2/5. This is what myasthenic crisis is all about. 2/5 means you can only twitch a little. My breathing was very weak. My heartbeat was slow. I felt like I was sinking – as if I would disappear into my gurney. Not quite as dramatically as the scene below and definitately not involving Freddie Kruger, but still.

via GIPHY

I still had to pee! When it came time to take my MG medicine from home (Mestinon / Pyridostimine Bromide), when asked, we said “it helps with nerve / muscle communication.” My poetic and philosophical nurse didn’t miss a beat, exclaiming “THAT sounds like a very good thing!” His recitation of verse by Greg Allman was extremely comforting. In the ER, you do what you do to get through.

How I became a Gourmet Vampire

The ER was put in touch with my neurologist and I was started on a drip of IVIG – an infusion of concentrated human antibodies. I had started IVIG a month before, making me a sort of gourmet vampire. I only take choice parts of the blood.

In the course of my visit, I stated I’m on good terms with the greater power (I am spiritual, but admittedly not the biggest fan of organized religion). If I hadn’t yet queued in as to my condition, this was a bit of an eye opener (no pun intended – I still couldn’t do much visually). I was aware of someone coding in another bay, and thanked my blessings to still be alive, while also thinking privately “here we go again.” I’ve had my share of health drama. At some point during the morning I was transferred to my own doctor’s hospital to continue the IVIG treatment, and was admitted for 5 days – one more day of treatment and then time for improvement.

My Own Daytime Hospital Drama

It took until the second hospital staff shift during my stay to convince all workers that I truly could not walk, while my husband was finally getting some rest at home. MG is an invisible disease. Eventually a special chair was procured to save my caregivers trouble getting me across the few feet to the bathroom, and to save me stress. Note to MG sufferer’s families: Immediately ask for the Sara Seat. I was on choke risk status for 48 hours, but didn’t have any appetite either way.

I saw a neurologist once a day for about 5 minutes (which were almost too precious to him), and was otherwise tended to by nursing and tech staff. In general, there was simply not much information provided. The future was a big blank of “well, this is the usual treatment regimen, and most people improve” type talk, but no certainties were given whatsoever. It was mainly only important to this young doctor that I was alive, or so it seemed. It was daunting to think this could now be my lot with this incurable disease, when I had gotten by thus far with no major crisis.

There were blood tests to see if any unidentified illnesses had led to myasthenic crisis. There were none. Questions about my stress level were top on the list, and I know my dear husband was probably suspect. If I tried to address the stress of the hospital and dealing during the past month with scraping by after an initial, non-EMT involving crisis on Easter, my statements were shrugged off. Having no information is extremely stressful to me. Face planting on a bed, because another staff member doesn’t seem to know your condition is also stressful.

Through all this and double room drama, there were really more good staffers than the few star bad examples forever burnt into my memory. Within 5 days I got to where I could stand up to use a walker with extreme difficulty. I could take inch-long steps then. I was being routed into in-patient physical therapy, but was emotionally kaput, stressed out, and missing my dog. I traditionally do not do well at all in hospital settings, and not in the “everybody hates the hospital” kind of way. I also now know that the CellCept I had been taking for a month was fueling high anxiety on top of an already well established fear of hospital admission. Finally, with a bit of finagling, I got the go ahead from my own neurologist to go home. Getting up 3 flights of steps took over an hour, but like I said above, I’m stubborn!

Progress

That was the most terribly spectacular day of my history with MG. The other most spectacular day was in late July, when I took my first purely recreational walk since May 1 in an air conditioned mall. MG and heat do not mix. On the vernal equinox (that’s September 22) I took my first recreational walk outdoors in cool mountain breeze.

There were other scares too and so much to learn about the condition. Even getting diagnosed was a long, awful process with many misunderstandings. Most people have never heard of the disease and many doctors are very hesitant to deal with you for other maladies once they see your MG diagnosis. It’s complicated.

Follow along and subscribe. Don’t let news of posts get buried in social media. As health allows, I will write more about my experience and try to raise a little awareness for fellow sufferers and their loved ones. If this resonates with you, please comment. Subscribe for new post notifications in your inbox.