MS Progressive Types: Frequently Asked Questions

This series of articles about Progressive MS has a lot of information, and not all of it is easy to read or understand. Perhaps a good way to review the subject is to cover some of the frequently asked questions.

How do I know if my MS is a Progressive type?
MS may start with an attack followed by a continual increase in the symptom severity, and that is Primary Progressive MS.

If MS starts with a Relapsing/Remitting course, it will probably advance in time, between ten and forty years, and the clear relapses will be replaced by a gradual worsening of symptoms. When there are no longer periods of recovery, that is Secondary Progressive MS.

Besides the functional characteristics, doctors can see that MS has advanced to a progressive course by using an MRI and EDSS (Expanded Disability Status Scale). The EDSS is a standardized measure of global neurological impairment often used in MS to determine type and severity. The National MS Society explains the scale.

Will I be in a wheelchair?
Not necessarily. Seventy-five percent of all MSers will never use a wheelchair. It takes an average of at least 20 years before any MSer needs a wheelchair. However, those with Primary Progressive MS have a shorter length of time, about 6 or 7 years. These averages were determined before the disease-modifying drugs were in widespread use. Hopefully, these drugs are delaying onset of the symptoms and there will be longer times before life begins in a chair.

Here are thoughts of Kimberly Fabrizio here on Health Central.

Many people use a wheelchair as a tool of convenience. Using a chair for long distances and to conserve energy during periods of tiredness might even postpone the time when there is no choice but to use a wheelchair full time.

Will I be disabled?
This is a tough question. MS is a disability, but an MSer is not considered disabled until progression has stolen the ability to earn a living wage and fully perform daily functions without aid, and sometimes substantial aid.

In the UK, MS is covered as disabled from the moment of diagnosis under the Disability Discrimination Act.

In the US, the Americans with Disabilities Act (ADA) defines a disability as an "impairment that substantially limits one or more major life activities."

For US disability insurance (SSDI), the question is not "Are you disabled?" but "Are you disabled enough?" The main criterion is whether your condition prevents you from doing your past work or adjusting to other work. Their criteria uses five questions to determine if your disability qualifies under the Social Security definition.

Will I still be able to play sports?
Of course. The type and intensity of the disability may restrict the type of sport or the type of adaptive equipment required, but yes, you can play sports. We have all seen the neighborhood wheelchair basketball game, at least in the movies, but it doesn't stop there. Many sports enthusiasts have developed disabilities and then developed adaptive devices that enable them to continue their beloved sports. Most sports now have an adaptive version, but it doesn't stop there.