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 through misdiagnosis. 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. The following post addresses the slow progress in getting a positive MG diagnosis, as well as the psychological impact of living with an unidentified illness for so long. I also address Myasthenia Gravis symptoms, and life with the disease without diagnosis.
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 heart in Summer 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.
This photograph from September of this year, which I perceived as sharp at the time, shows an example of Myasthenic blur. The body and the brain have an interesting way of compensating. That’s all part of a typical MG diagnosis story.
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. How humiliating to be outside the shop you’re was about to do business with, and backing into a parked car when your nerves having permitted your leg to switch from gas to brake pedal. No doubt stress and anxiety had weighed in here. The other driver was livid, thinking it was intentional. I was only saved when an onlooker arrived 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.
Adding to the puzzle in the search for a 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. At that point I was sedated by psych meds for major depression and PTSD, which contributed to severe weight gain (and yes, they do increase appetite). They saw all of this and I was stuck with misdiagnosis time and again.
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). From day one, my medical rap sheet was a yard long. Adding misdiagnosis to that, it great. 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 in administering anesthesia are required for MG patients. Employment became physically very difficult. I was 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.” It would be great if I can help anyone shorten their list of misdiagnosis.
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 now, 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. That in itself lead to more misdiagnosis.
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, which was better than getting a misdiagnosis. A study shows a MG linkage to Epstein-Barr has been found. There very well also may be to my EB related virus.
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 Myasthenia Gravis symptoms enough to describe them.
During the examination I had a limp, which I had never noticed. This Myasthenia Gravis symptom still plagues me. 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. Nothing has been said about that since. Rather than serve up another misdiagnosis, he referred me to the Cleveland Clinic. I was off to the big guns.
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, long suffering mother, now deceased, 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, he started off edgy, and then flew into an utter rage when I had a hard time naming specific symptoms. Possibly my insistance on keeping an appointment with him started things off badly.
Fatigue and feeling awful were apparently not a big enough complaint for this clinic. In hindsight it is a major Myasthenia Gravis symptom for me. Still, it did not help land a Myasthenia Gravis diagnosis, yet. 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 ran out of the room to the bathroom and broke down and sobbed in a stall’s relative privacy. No diagnosis is a strange type of misdiagnosis. I guess my limp wasn’t exhibiting that day. Maybe nothing was. Myasthenia Gravis symptoms are not necessarily constant or consistent. They are 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.” That was a huge, depressing, misdiagnosis.
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, and after so much misdiagnosis, 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 Myasthenia Gravis 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, even in the heat. I scraped by.
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 – the most obvious Myasthenia Gravis symptom. 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 neurologist in Northern Virginia. After an MRI showed no brain tumors, or the like, I was tested 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, or a misdiagnosis. The leap landed solidly. The costly blood test for MG was positive. An EMG/Nerve Conduction Study was administered on that day too. I was nearing a diagnosis.
The next step got relinquished by my doctor to a neurologist at Georgetown University Hospital. I can’t help but notice I’ve named 6 neurologists in this article alone. Getting the picture? My original Northern Virginia neurologist had been on the fence as to whether to get me to do a single fiber test for additional verification. Thankfully the Georgetown U doctor 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). Had it been needed to keep me from more misdiagnosis, I would have gone through with it.
I finally had a correct Myasthenia Gravis diagnosis.
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 was suggested then that having it removed improves the patient’s chances of not progressing to worse Myasthenia Gravis symptoms. Updated April, 2020 – Current evidence points to thymus removal definitely offering symptomatic relief up to remission. I now know things can get worse before they get better, and the improvement can take as long as 10 years to start showing.
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.
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.
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. I am still thankful for that doctor not having served up another misdiagnosis.
A Welcomed Hug
I did show improvement post-thymectomy (update: at first). 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. Ironically, “stumbling” can be a Myathenia Gravis symptom. 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.