10 Things I Didn't Know About MS Before My Diagnosis

Community Member

Like so many people, I didn't know much about MS when it became part of my life. Here are 10 things I did not know prior to my diagnosis.

1. You can't tell by looking

There are so many hidden symptoms of MS that for many people it is an invisible disability. Because it is not so obvious, other people don't know when an MSer doesn't feel well or has difficulty moving. Others can't tell by looking.

2. Spasms are normal part of the 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 into a stiff   limb or a tremor that one MSer described to me as a "jackhammer effect." I did not know about spasms.

3. Vision is affected

Optic neuritis is often the initial MS symptom. When asked about my optic neuritis, the ophthalmologist said my nerve could be repaired, but it likely would not last - the MS would interfere again. Currently, I have recurring double vision, sometimes triple. There are times my line of vision may be simply blurry or pixelated with dancing colors. I did not know vision is such a big part of MS.

4. Diagnosis is difficult

So many diseases are similar to MS, and doctors are hesitant to designate MS without first   eliminating everything else on the path to diagnosis. It may take multiple MRIs over a period of years. Often a person lives in   "limbo" awaiting the final diagnosis. I did not know diagnosis takes so long and is so difficult.

5. Age is not a factor

Although MS is generally known as the crippler of young adults, some people are diagnosed in their 20s, some in their 30s, 40s or even 50s. Older people and younger children are now taken seriously when they complain of symptoms that sound like MS. I was 40, and it took at least eight years. 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 then either.

6. There is no pain

I was told there is no pain with MS, so I wondered if I had something else, too. It was years before I learned that at least half of us experience some type of neuropathic or musculoskeletal   pain. Whether it is acute or chronic, what was once considered to be a painless disease is now understood to include pain.

7. It is not hereditary

I was assured that just because I have MS, my children do not have a higher risk of contracting this condition, too. Based on new research, we know my kids have a higher risk than the general population, but that risk is still very small. The current thinking is that genetics are a key factor in understanding MS.

8. Heat has a debilitating effect on many people with MS

When I was first diagnosed, I was cautioned to take special care in the summer heat. I dismissed this warning because I had been living in Texas for several years with no problems. However, it surprised me a few years later when the Texas sun left me slumped over my scooter without enough energy to steer myself to a cooler area. I was warned about the effects of heat, but I was surprised the Texas summer heat would leave me practically helpless.

9. There are different types

I was told I have MS. Later I learned I had Relapsing/Remitting MS, and now I know I have Secondary Progressive MS. Besides those, there are two other types: Primary Progressive MS and Progressive/Relapsing MS. Often the type is not known at the time of diagnosis. As I understand it, for example, Primary Progressive may be given a year or more to see if there is a recovery period before making a decision.

10. What a blessing it is

So many MSers talk about how MS changes our perspective, allowing us to appreciate life with new priorities. I have read many accounts written by people who have found many blessings in their life with MS. When MS makes us slow down, we have time to see smiles we would have missed. With the right attitude and the right perspective, MS can be a blessing.