A lot has been written about myasthenia gravis, but little has been written from the standpoint of what it is like to have myasthenia gravis. I read this in a health article about the disease that went on to describe what it is from a medical standpoint. They are right. Much has been written about what the disease is and various ways of treating it, but few have written about what it is really like.
Perhaps that’s why I have it. To tell other what it is like. In so doing, I realize I will be disclosing information that is specific to me and the form (double-seronegative myasthenia gravis) that I have.
Realizing Something Was Seriously Wrong
After a bout of the H2N3 flu virus, I still felt like I had the flu. I just didn’t have the fever and nausea. All of the other symptoms remained. The logical conclusion was I was out-of-shape and needed to work my way back to getting in shape. After all, I just spent 3 weeks in bed with the worst case of the flu I had ever had.
My wife, who has always been in less physical shape than me, had recovered fully and was back to her normal self. This was discouraging. So, I’d go for a walk around the block in an effort to get back in to shape. However, I’d come home and I would have to go straight to bed because I felt so weak and exhausted. It wasn’t the type of exhaustion where I was out of breath, but the type where my muscles were telling me they have no more strength.
I began falling and tripping. Occasionally the room would feel like it is spinning. It was like someone had drugged me, but I wasn’t sleepy, just dizzy and tired.
Next came tremors. I’d attempt to unwrap something and my hand would go off in uncontrollable movements. I couldn’t will it to stop, nor could I force it to start. (This type of movement is called dystonia.) Or, I’d just be sitting and happen to notice my thumb moving back and forth (i.e. a tremor.)
I started searching the Internet looking for clues. I’d find one diseases, and I’d start noting the symptoms that I had, but when I’d come to symptoms that I didn’t have, but were common to that disease, I’d go looking at the next.
At length I came to the conclusion I had ALS (Lou Gehrig’s Disease). And, here is what I read (from WebMD):
Some common early symptoms include:
A hard time holding items with your hands
A hard time holding your head up
I had every one of those symptoms. Plus, I had some of the more advanced symptoms. The more I read about ALS, the more I was convinced I had it and I probably had 1-6 years to live.
Convinving Me to See the Doctor
My wife would say, you should see the doctor. In the back of my mind I was thinking, ‘Why waste time and money to be told you’re going to die?’
Finally, as I lay motionless on the bed my wife asked, “Why won’t you set up an appointment to see the doctor?”
My reply, “Because I’m afraid of being told this is something really bad.”
She then said, “In what universe does that make any sense.”
The General Practitioner
My general practitioner listened to everything I had to say, and checked some vitals while asking me to perform tasks like touching my nose, pressing against her hand, etc.
After her answering her questions and letting her do some simple strength tests she said, “Well, my first guess is myasthenia gravis, followed by Parkinson’s and followed by M.S.”
In my research, I had come across myasthenia gravis, but brushed it aside because MOST of what you read about the disease talks about ptosis. While ptosis is the most common visible symptom, it doesn’t begin to describe the rest of the disease.
She began having me do blood test after blood test (48 in all), as part of a way to eliminate certain disease that can be detected through blood tests. She actually tested me for antibodies that are commonly found with MG, but when they came back negative she told me it is possible to have a false negative with MG.
She also told me to see an Ear-Nose-Throat specialist and a neurologist. I set up both appointments that day. This was in May, and the ENT couldn’t see me until the end of August and the neurologist couldn’t see me until the end of September.
The ENT was looking for throat cancer and problems that would account for my speech difficulty, swallowing problems and breathing problems. He concluded my problems were neurological in nature. He based that conclusion on observing that my vocal chords were half paralyzed.
A friend in the medical profession helped me get in to see a neurologist one month before my schedule appointment. Her argument was this could be a brain tumor or stroke. While I didn’t think it was either one, I was grateful that she pushed to get a doctor to see me immediately.
The neurologist did a bunch of simple tests, and then took me to a room where he wired me up and performed an EMG and SFEMG tests. They were painful and were akin to torture, but necessary to diagnose this disease.
At the end he concluded that I have double seronegative myasthenia gravis. The confirming test would be to see if I respond to pyridostigmine (Mestinon).
Within 12 hours of taking the Mestinon I started noticing relief from some of the symptoms. However, the drug’s effect is rather short lived. After a month on it he also started me a prednisone to suppress my immune system.
The two help, but aren’t a cure. It requires consistent, frequent doses of both drugs.
Living with Myasthenia Gravis
It’s been about nine months since being diagnosed and being on medication for MG. What is it like living with MG?
First, MG robs you of strength. Not all at once, and not over the entire body. For example, today’s first frustration was unplugging my electric razor from the charger. I couldn’t do it with my right hand. My hand was too weak, so I reversed how I was holding the razor and my left hand was able to do the job.
Sometimes there is no warning. In the back of my mind, this is frightening. I’m always wondering at what point does a major large muscle stop and cause me to have a serious fall?
It’s a valid question, and one asked by many of my fellow myasthenics.
You try to go on living like that isn’t going to happen, and on most days, it doesn’t. Most commonly, the lack of strength occurs when you try to do something, and you simply can’t do it. That can be opening a pill bottle, tearing open an envelope, pushing a door open, buttoning your shirt, cutting your food, etc. You don’t know until you try, and then you keep trying, and then you try plan B (whatever comes to your mind), and when that fails you ask someone else to help you or do it for you.
Twice now I have had to ask people sitting near me to open my pocket pill container. Yes, it is embarrassing, and sometimes you may feel humiliated.
Losing your strength to do simple daily tasks is frustrating, discouraging, embarrassing, humiliating and for me, one of the worst symptoms of this disease.
Energy (or stamina) is by far the most common symptom myasthenics have. When I hear people talk about chronic fatigue syndrome (CFS) I think myasthenics can fully relate. MG isn’t CFS, but CFS is the most common symptom of MG.
I woke this morning and I realized I would be spending my entire day resting. After a good 10+ hours of sleep last night, I woke AWAKE but physically drained of any energy.
I forced myself to do a little house work in the room where my wife was packing things up. I took the broom and swept about 8 linear feet and realized I was done for the day. It might have well been a 50 mile bicycle ride. Every muscle in my body was saying, “STOP. We’re done. We have no energy or strength.”
You can read stuff that says MG is not painful. I had this discussion with my neurologist, and he kindly explained the actual neuromuscular junction activity we call MG isn’t painful in itself. However, MG results in pain due to over-compensated muscles.
I asked a few thousand people in my online MG group about pain. Only a few responded they don’t have any pain. So, for most of us, pain is a way of life.
The physical pain I feel as a result of MG I can now predict. When I feel a muscle getting weak, and I ignore the symptom and push myself, I can predict that the compensating muscles will hurt beyond any pain I have ever felt before.
The worst case of this occured last week. I was showing a couple of young men how to move a bookshelf. While I was letting them do most of the work, I pushed myself beyond what I should have done.
That night I had a pain in my back that was unlike any back pain I have ever felt before. The pain was so intense the tears flowed. Over the counter painkillers didn’t do anything. I increased my prednisone and laid in bed for the next 16 hours.
I’ve had similar pain in my neck because it becomes difficult to hold my head upright. Sometimes you have no choice because there’s no place to lay down.
For these reasons, I have to limit time away from my bed or special chair. If I don’t, the next morning I WILL have muscle pain so bad in the back of my neck and head that it brings me to tears.
… to be continued…