Myasthenia Gravis Hits Prime Time … Now What

I, like many other people with MG who happened to be watching the U.S. television show Empire last night, couldn’t believe that the main character Lucious Lyon had been misdiagnosed with ALS when he actually had myasthenia gravis (MG). [Note: I think the show House was the first to mention myasthenia gravis in prime time television

I’m grateful that someone in TV land thought about MG and put it out there, but I am concerned about MG being minimized and written off as being “highly treatable” and, thus, not a real threat to the person’s life.

I’ve watched the series since the very first episode. Knowing what I know about MG as a sufferer and what I’ve seen other MGers endure I’d say that if the show writers want to depict Mr. Lyon as a genuine MG patient, they will have to show him going through a lot of what we deal with every day.

Most myasthenics take multiple meds just to be somewhat functional every day. Some myasthenics are miraculously able to manage full-time jobs, a family, etc., while others are completely disabled by the disease.

There are several options to treat/manage the chronic symptoms of MG, but many of those meds are not always very effective or they cause even more problems including, but definitely not limited to the following:

  • Unwanted weight gain (prednisone)
  • Bone density and calcium loss (prednisone)
  • Serious and inconvenient intestinal distress (Mestinon/Pyridostigmine)
  • Mind-blowing headaches that rival the worst of the worst migraines (IVIG infusions)
  • Aseptic meningitis (IVIG infusions)
  • Destruction of red blood cells resulting in acute hemolytic anemia (IVIG infusions—this happened to me two years ago and I was VERY lucky to have survived—thanks a million to the person who donated blood for my blood transfusion!)
  • Various forms of cancer (Imuran, Cellcept, …)
  • Blood clots, infections (plasmapheresis)
  • Infections and possibly other complications (thymectomy)

Not all myasthenics have a rough time with whatever combination of treatments they and their neurologist determine are best for them, but it’s rare to meet a myasthenic who hasn’t endured some of the side effects listed—and not listed—above along with the general every day symptom lineup.

One of the first things my neurologist told me before we started any form of treatment was that stress was going to be my number-one enemy and that I would have to find a way to control it. Stress included both physical and mental stress. I ultimately ended up leaving my job (you can look at some of my earlier posts about that saga). Now, let’s go back to the TV character Lucious Lyon. He’s in a high-stress, high-drama environment practically every day. A real myasthenic in that setting would likely have visible MG symptoms throughout a day like his. I’m talking face or eye drooping, maybe slurred speech, stumbling or tripping, perhaps some hand tremors and dropping things, shortness of breath, and the inability to stand or walk around for extended periods of time—don’t get me started on the stairs!

As angry as this character gets at times, I can see him diving into a myasthenic crisis and landing in the hospital requiring a ventilator to help him breathe. Ventilators and hospitals = myasthenic nightmare! The myasthenic crisis is the point practically every MGer prays they never reach. It can be seen as a crossroads of sorts. You could live or you could die. If breathing difficulties are not caught and managed quickly, you could die. Period. Having MG and then being suddenly hit with a viral or bacterial infection or having other chronic ailments flare up can easily set off a chain of events that lead to death. MG can kill directly or contribute to a chain of events that can take you out.

Like ALS, MG symptoms are chronic and are not curable so far (I’m still holding onto hope all autoimmune diseases will have cures one day). ALS patients, even with medication to help slow the degenerative process, deteriorate rapidly and die. I’m not sure what the life expectancy is for ALS patients once symptoms appear, but it seems to be rather short.

For MG patients, barring an untreated or not-treated-in-time myasthenic crisis, a serious medical complication from treatments, or an accident like a fatal fall due to weak legs, life expectancy can be considered average. Since being diagnosed myself in 2012 and becoming a part of various MG support groups, I have seen several people of varying ages die from the disease. I personally do not think anyone should die from MG. I feel that we as patients and the medical community being paid to help keep us alive still have a lot to learn about MG. So many MG symptoms overlap with those of other diseases, which would explain, to a certain extent, the misdiagnosis of Mr. Lyon. This isn’t discussed in the show, and there’s a lot to it that I will not go into here but some myasthenics do not exhibit the AChR antibodies in their labs (meaning they’re seronegative). They have the classic symptoms of MG, but their blood work doesn’t reveal it in that way. I’m guessing when this happens, depending on the experience of the doctor, they’ll continue digging for answers that point to MG or to other diseases with similar symptoms. It’s crazy complicated.

MG doesn’t mean a definite death sentence but life quality is definitely altered. A myasthenic’s life and the lives of their friends and loved ones are affected. So many things have to be considered to get through a typical day. Eating can be a challenge especially if you’re having difficulty chewing or swallowing. Speech can be slurred even if you haven’t been drinking! Showering/bathing can be challenging when your legs and arms are weak (many myasthenics have to have assistance with such things when too weak to manage on our own). Try brushing or blow drying your hair with weak arms—next to impossible on your own. Extreme temperatures, such as high heat and humidity impact a lot of us, while others are impacted by extreme cold. Many of us were athletic or extremely active before MG took over. I used to walk four miles every other day and work out with weights on the days in between. I’m medicated and mostly functional most days but I’ve yet to manage to walk even one mile or lift more than five pounds of weight since starting treatment. Some can’t even lift one or two pounds without difficulty!

I could go on and on with a list of daily things that are often challenging for myasthenics, but I’ll spare you plus my vision is becoming blurry from staring at this screen and typing up all of this (thank you MG!).

When the next season of Empire starts, I really hope they do not write off his illness because it’s “highly treatable” and that he’ll be the extremely rare, ideal patient who responds perfectly. That would not keep the disease “real.”