A Very Unpleasant Lottery
A Very Unpleasant Lottery
Being Diagnosed With Multiple Sclerosis
Michael Goodwin
Multiple Sclerosis (MS) is a degenerative autoimmune disease that affects the central nervous system. It is marked by lesions on the spinal cord and in the brain that lead to debilitating physical symptoms as well as cognitive and behavioral issues. What does this mean? Basically, your immune system is attacking your brain.
The odds of being diagnosed with MS in the United States are somewhere around .3%, so if you are reading this, you or someone you know have beaten the odds (or you have very peculiar reading habits.) While genetic, behavioral and geographical elements all may play a role in who is afflicted, the simple answer is that there are no conclusive studies as to what causes MS. So what can you expect when facing a diagnosis? Well the process is not an easy one, but as I went through it myself, I will walk you through it to the best of my abilities (I’m a generous boy.)
First, you will more than likely have symptoms, as no routine tests will catch MS. Symptoms vary but can be broken down into 3 different types.
- 1. Eyesight
- 2. Muscular
- 3. Mental
Eyesight is usually one of the first symptoms a patient will suffer. It is not uncommon for the optic nerve to be affected, resulting in blindness in one eye. It is also not unheard of for blurry or double vision to occur. A sensation of “floaters” in the eye are common as well. Luckily, these symptoms tend to be temporary, but are very concerning to a person unaware of the cause.
Muscular symptoms are also very common and can be temporary or permanent. These include tremors or coordination difficulties. Paralysis and painful muscle contractions as well as generalized pain may also occur. Numbness and increased sensitivity also can be expected.
Finally, mental and cognitive issues also develop in MS patients. Mood swings, cognition difficulties (cog-fog) and fatigue have all been reported. Balance and equilibrium may be affected to a point of dizziness and vertigo.
Unfortunately, the wide variety of symptoms are almost always present in a wide range of other diseases, so finding MS is usually a process of ruling out other conditions as opposed to a simple yes or no test of MS. There are, however, a battery of tests that are relied upon by neurologists to officially diagnose one with MS.
Chances are, the patient will first see their general practitioner after experiencing symptoms. This will probably lead to a physical examination along with blood tests. If the initial symptom warrants it, a neurologist will usually be consulted which will lead to an initial magnetic resonance imaging (MRI) being ordered.
A painless and non invasive test, MRIs can be a terrible experience for a person with claustrophobia. It is best to keep in mind that a test of the brain and cervical spine will usually take a little over an hour to an hour and a half. There will be a variety of alien noises from a strange metallic humming to thumping and clanking. Luckily you will usually be offered headphones that will play music to cover the noise (mine sounded like they were pulled off of a Russian submarine from the 1950s and they played Taylor Swift on a loop the whole time. I should have taken my chances with the clanking.) Usually you will need to wait a week or so to see your neurologist to get the results. If lesions are found, you will now undergo many other tests, ranging from spooky flashing television screen to electric needle poking. So clear your calendar, it gets a bit crowded.
Evoked potential is a test that looks like something from a conspiracy theorist’s nightmare. Basically, the patient is shown images flashing quickly and told to follow them with their eyes. The point of this is to measure the time it takes the eye to adjust or track the object (I personally think it’s just their way of giving you the creeps. I think they get bored.) It is a painless test with no adverse side effects, takes about an hour and you’re good to drive home.
Electromyography test, or “Probably A War Crime If Done On A Foreigner” is where needles are inserted into the skin and then for added fun, electric current is passed into them. Something resembling the sound of a Geiger counter then measures the time it takes for the nerves to conduct the current. In all honesty, this test is far more anxiety inducing than painful. Again, about an hour (maybe 10 minutes of actual needle time) should be expected for the entire appointment.
Electronystagmography will be performed if you say you feel vertigo or experience balance problems. You will have strange goggles placed on your eyes and have air shot through you ears (another test where I’m like 60% sure they’re just screwing with you.) It will not cause you any discomfort really, it will just be strange to be in a dark room with a technician looming over you with an air pump.
Finally, if you make it to the last stage without receiving a different diagnosis, you will probably have a lumbar puncture. Lucky you.
A lumbar puncture is basically sticking a needle in between the patient’s vertebrae to go digging for some sweet, sweet spinal juice. This cerebrospinal fluid is what surrounds the brain and spinal cord and will indicate any demyelination. Demyelination is a process of nerve damage in which the myelin sheath (a protective barrier around nerve cells,) is damaged. Think of a cable, the insulation (rubber coating) is the myelin, the copper wire inside is the nerve. In MS, the immune system is attacking this sheath, and is detected in the spinal fluid.
The lumbar puncture is normally a relatively painless procedure and again, you will normally be in more anxiety than pain (mine was a tad different, it was like the old boy was drilling for oil. My back looked like a crime scene when he was done.) If possible, you will be asked to remain laying down for up to a day to avoid risk of a headache.
After all these tests are done, you will more than likely be called into a waiting room like any other appointment and be given a life sentence with an incurable disease. It will be scary, fast, confusing and over very quickly (sounds like something else, but with a much worse ending.) For some reason, these doctors think it’s comforting to tell you that “You won’t die from MS, but you will die with MS.” Feel the comfort. They have the bedside manner of a hornet.
Luckily, many treatments exist that reduce the damage MS will continue to do as well as treatments of the symptoms that damage produces. Current research into remyelination (repairing the myelin sheath) as well as repairing nerve damage itself may indeed reverse the effects of MS. A prominent MS doctor has said that while he thinks a “cure” for MS is unlikely in his lifetime, he does believe that doctors can make the disease “boring.”
Now, maybe this man’s idea of boredom differs slightly from a sane person but I think what the good doctor (God I hope he was a doctor) meant was that it would be manageable and not noticeable.
So what can you expect from your diagnosis? Fear. You can expect to be afraid, and that’s understandable. Allow yourself a few moments of fear but then you will have to confront this disease to the best of your ability. Luckily, modern medicine and science are also on your side. Current disease modifying therapies slow, and in many cases halt disease progression and are available in many different forms. This allows your medical team to tailor a plan specific to your needs.
If you or someone you know have won this “lottery,” just know that it no longer is as terrible as Shirley Jackson’s “The Lottery” (story where the winner gets pelted to death by rocks. I read that in middle school and am finally able to say I used it in a sentence. I am now fulfilled.) MS is rarely as fearful as your own imagination, and while you will have bad days, you will find a treatment plan to overcome them.
