Atypical Multiple Sclerosis

I understand that money needs to be raised to finance research for Multiple Sclerosis: new meds, cause of MS, etc.  But, I have PPMS (Primary Progressive Multiple Sclerosis) for which the National Multiple Sclerosis Society seems to finance very little research into any disease modifying drugs.  

I know that only 15% of PwMS have PPMS, but if there are 400,000 people diagnosed with MS in America, that means 60,000 of those are diagnosed with PPMS.  So for many years these 60,000 including myself were and are told that we don’t really matter.  Putting a smile on your face with a positive attitude doesn’t really cut it.  I mean within one year of symptoms appearing I was (and still am) walking with forearm crutches.  In fact, a wheelchair was waiting for within two years.  Luckily, my docs offered Cytoxan (still an experimental drug for treating PPMS).  I took it, and it helped.  

THERE IS NO APPROVED DISEASE MODIFYING DRUGS FOR PRIMARY PROGRESSIVE MULTIPLE SCLEROSIS.  So where has all the money gone.  To Relapsing Remitting Multiple Sclerosis of course.  After all 340,000 people are affect by RRMS.  

I participated in exactly one MS Walk.  The first year my sister was diagnosed with MS.  I rallied the family, learned how to fundraise, organized and orchestrated our team.  That was when I could walk.  I watched my sister steadily decline.  Unsure whether she had RRMS or Secondary Progress (SPMS), docs put her on Copaxone.  She did well for awhile.

The following year my other sister was diagnosed with RRMS.  She had one brain MRI.  She was lit up like a Christmas Tree.  No lumbar puncture, no evoked potentials, no brainer-RRMS.  She too was put on Copaxone.  Meanwhile, I was trying to get diagnosed with something so that I could receive treatment.

See the dirty little secret is that along with no treatment for PPMS, it is very difficult to get the NMSS to speak about PPMS.  After all, how many dmd (disease modifying drugs) does RRMS need?  

So this brings me to MS Walks and Bike-a-thons.  It’s great that so many people with MS can participate in theses events.  There are so many cannot participate.  We don’t need someone else to do it for us, that happens often enough as it is.  We, PPMS’ers, need help with daily activities as it is.  

Why doesn’t NMSS sponser fundraising events in which everyone can participate?  As my husband says, “Having a Walk for people that can’t walk, is like having a drive-a-thon for those who cannot see.”