Atypical Multiple Sclerosis

Multiple Sclerosis is a chronic disease of the central nervous system comprising the brain, spinal cord, and optic nerves. There are generally considered four courses or categories of MS-relapsing remitting, secondary progressive, progressive relapsing, and primary progressive. The first three are in the larger relapsing remitting (RRMS) category, while the fourth one is stands alone (PPMS).   PPMS is the only course for which disease modifying therapies are unavailable.  

Although I look like all other PPMS patients I carry the Atypical MS diagnosis because I do not fit neatly into the diagnostic criteria set forth by a group of neurologists who govern these issues. This group of neurologists set forth the criteria because there is no definitive test for MS.  MRIs, lumbar punctures, and various means by which to eliminate other diseases are used when diagnosing MS, BUT these results do not give a guarantee, 100% surety that the disease you are experiencing is MS.  

So, what are the diagnostic criteria anyway?  Well, the current criteria is called the Revised McDonald Criteria which lists several different possibilities set out by the International Panel on the Diagnosis of Multiple Sclerosis.  Sort of like a board of directors deciding a financial plan for their corporation.  Anything decided by a committee usually looks like a Mr. Potato Head put together by a two year old.

As a result many people, I won’t refer to these people as patients because that objectifies them making them seem like a cardboard box, fall through the cracks.  Falling through the MS crack is akin to falling down the proverbial well.  Isolated, stuck, screaming for help without being heard and unable to scale the cold, slippery stone wall back into daylight.

I stated this blog because I am diagnosed with Atypical Multiple Sclerosis.  In 2006 after a year long battle consisting of many medical tests and several callous neurologists I finally found a compassionate doctor who was willing to work with me.  By the autumn of 2006 I was diagnosed, however, we keep looking for answers.

Having a progressive form of the disease is isolating.  Most of the information about MS speaks to Relapsing Remitting MS.  All of the disease modifying meds are approved for RRMS.  The idea is that 85% of patients have RRMS so therefore most of the money, research, time, energy has been in that area.  The latest numbers show about 450,000 people in the US suffer from MS.  That would be about 382,500 RRMS patients.

But 67,500 people suffer from PPMS.  We are told that because we are only 15%, we should not matter.  How many different meds do RRMS patients need?