1. You can’t tell by looking
There are so many hidden symptoms. MS for many people is an invisible disability. In some cases, it’s even invisible to the MSer between relapses. Because it’s not so obvious, other people don’t know I don’t feel well, how difficult it is to move, that I must park in the handicapped space or that I don’t have the energy. How embarrassing it is to say “No.” Some people think I’m a hypochondriac, that I’m being too dramatic and too quick to refuse a new activity. They can’t tell by looking.
2. Spasms are normal part of your day
I remember as a schoolgirl one of the bad name-calling words was “spastic.” Now I am one. I did not know exactly what it meant, thinking of dramatically wild seizures. Now I know. It can be as simple as a single muscle tightening in an immoveable limb or a tremor that one MSer described as a “jackhammer effect.” I did not know about spasms.
3. Vision is affected
MS is a neurological condition, not blindness. In my first visit to a newly diagnosed support group, one of the ladies had a big, black seeing-eye dog. One weekend my sight was consumed by static like a TV set that lost its signal. I had recurring double vision. The ophthalmologist said the nerve could be repaired, but there was no way to determine how long it would last – the MS was likely to interfere again.
4. Diagnosis is difficult
So many diseases are similar to MS, and MS is like so many diseases. A large portion of my path to diagnosis was eliminating everything else. I know chronic fatigue syndrome, lyme’s disease and lupus were considered, and I don’t remember what else. I went through batteries of tests and questions, and sometimes the answers were different than the time before. Finally, after over eight years, my diagnosis was “Probable MS.” After a few more years, it became safe to drop the “probable.”
5. Age is not a factor
Some people are diagnosed in their 20’s, some in their 30’s, some 40’s and some 50’s. My doctor told me sometimes autopsies are the first time MS is identified. Teenagers and younger children are now taken seriously when they complain of symptoms that sound like MS. Apparently MS can strike anyone at any time in their lives. I did not know that – but, to be fair, the medical professionals did not know either.