The National MS Society presented their most recent estimate (prevalence) of people with MS in the United States at the European Committee for Treatment and Research in MS. The number everyone has used since 1974 was 400,000, but that head count has been in doubt for a long time. I’ve taken the position that since I was diagnosed in 2008, our numbers were probably double this, and guess what? I was still wrong!!! The MS Society estimates there are ONE MILLION people in the US with MS.
Why is there such a difference in numbers? For one thing, this count was done before the advent of disease modifying therapies (DMTs) and the common use of the MRI (magnetic resonance imaging) machine. Let me explain why those are both significant.
Impact of DMTs
Before the first DMT was introduced in 1993, it was commonly accepted that a person with MS would live 7 years less on average than their peers. With the use of DMTs, people are living longer because the once debilitating effects of MS are controlled for a large number of people. Unfortunately, there are still some people who have an aggressive form of progressive MS who this does not apply to but overall, DMTs have extended our lives. In other words, there are more of us living much longer than pre-DMTs.
MRIs for confirming evidence
The MRI – or magnetic resonance imaging machine – is also a more recent development and its common use to look for indicators of MS via lesions on the brain didn’t happen routinely until very late in the last century. MRIs were developed in the 1970’s and not commonly available until a few decades later. The original estimate of 400,000 people with MS was formulated in 1974, before MRIs was tested on the first human in 1977. Today almost every radiologist has access to this diagnostic tool alongside the common x-ray and CT Scan machines. Now that we have ready access to the MRI for testing it is easier for the neurologist to find supporting evidence to go along with their neurological exam that allows them to be fairly confident with their diagnosis. Those cases where the doctor thought it might be MS, but had to wait for more evidence can now often find that proof in the MRI results. This means more people are being diagnosed because neurologists can see MS in their MRI tests.
Dr. Google helps
Finally, I believe the internet and our increased awareness of multiple sclerosis and its symptoms have made the rate of MS diagnosis increase as well. People are now able to easily confer with Dr. Google to check out why they have dizziness, fatigue, strange sensations, blurred vision and much more that can all point to possible MS. Instead of merely treating those symptoms to see if they might improve or get worse, people are more likely to request referrals to a neurologist for further evaluation. Those referrals often result in the formal diagnosis of MS.
Why it matters
The jump from 400,000 to one million people in the US with MS comes from these changes since 1974: improved medical imaging technology, early diagnosis, education, and wide-ranging treatment options. At least that’s my theory and has been all along.
Why is this number so important? It recognizes MS as a more common disease and should qualify for additional funding to find a cure and prevention. When we think about having MS we know we are special but now we also know we are just one in a million.
Wishing you well,