It’s easy to do. Especially in the beginning when you’re just starting the journey towards diagnosis. You’ve visited your primary care doc and described a list of strange symptoms, from vision loss to numbness to leg weakness. You get a referral to a neurologist but the appointment is two months into the future. So you wait.
The stress of waiting for a diagnosis
Many people with MS experience the pre-diagnosis period as one of the most stressful times of their lives. They might seek out online MS forums and reach out to patients for comfort and information. Many will list their symptoms and history, inviting opinions about what might be the cause while others voice their fears much like those in the following comments:
For six years off and on I’ve been incontinent. My joints hurt all the time and my left knee buckles sometimes. I get blurred vision for weeks and then it goes away. Is it MS?
I have an appointment with a neurologist in one month. I’ve had symptoms that seem like the same ones I read about MS. Can you tell me what to expect?
Last week I woke up and my legs wouldn’t work. Now I can’t control my bladder. I have an appointment with a neurologist but it is months away. I’m so scared. I know worrying isn’t making it any better but I can’t help it.
Watching and waiting
Those of us who have been diagnosed and have lived with MS for a number of years clearly remember those uncertain months when it seemed that all we did was wait; wait for the next appointment, wait for a mysterious symptom to change, wait for a symptom medication to take effect. It’s hard to pinpoint what is causing more stress: these troublesome mysterious symptoms or the fact that we can’t put our lives on hold while coping with them. When MS hits we are usually working full-time and must be careful what we tell our employers about what is happening. We are, in fact, waiting for several shoes to drop: 1) Waiting for a diagnosis, 2) waiting for our symptoms to subside, and 3) waiting before we decide what to do about work. That’s three heavy-as-iron-horse-shoes dropping on us and we’d be wise to step aside to avoid getting beaned. But even if we could have that kind of control during the early stages, there are plenty more shoes dangling overhead in the years to come.
Fears of relapsing
For example, those of us diagnosed with relapsing-remitting MS might fret about when the next relapse could happen. People tend to look for patterns and we usually find a few eventually. And for those who relapse frequently, fretting can become obsessive, resulting in fear of the slightest stresses triggering an actual relapse. That fear can be very much grounded in reality since many people with MS have expressed unequivocally that emotional stress itself will bring on a relapse, prompting a visit to the doctor for both validation and a course of anti-inflammatory treatment.
For those patients who, like me, don’t have flares more often than every 5 or 6 or more years, the shoes are still hanging up there in the rafters—only fear and anticipation have been refocused on the daily challenges of living with the permanent disabilities that occupy most of our thoughts.
Fears of progression
Patients diagnosed with progressive forms of MS can’t know any more about the future of their disease course than those with the relapsing-remitting form. Clinical depression can develop from worry about the shoe dropping in as the unwelcome guest that arrives at the worst possible moment. Some patients with PPMS and SPMS have benefitted from readying themselves for future losses by researching home health services covered by their insurance and modifying their homes with grab bars and widened doorways that accommodate mobility aids, among other kinds of pre-planning.
We all know it’s certain that the shoe will drop eventually. If we prepare ourselves ahead of time, the heavy boot of fate might only make contact with the floor and not our delicate heads.