Diagnosis

I was diagnosed with MS in September 2011 at the age of 33 which is common. Most people are diagnosed in their 20s – 40s. I was initially diagnosed with Remitting Relapsing Multiple Sclerosis (RRMS) which is characterized by clearly defined attacks - also called relapses, flare-ups or exacerbations - of worsening neurologic function. These are followed by partial or complete recovery periods (remissions). In retrospect, and hindsight being 20/20, I was experiencing symptoms up to 10 years prior. After my first ‘flare’ in 2001 when my legs couldn’t bear my weight, I experienced episodes of weakness, numbness, and unexplained pain. MS is difficult to diagnose:  There are over 50 symptoms linked to MS, and each person develops symptoms differently. Many of these symptoms mimic problems that occur with other diseases. I was misdiagnosed with Psoriatic Arthritis and was treated by rheumatologists for years – specialists often have tunnel vision and don’t look outside their field. Who knows what an earlier diagnosis may have led to – everything or nothing.

In 2013, my doctor casually said, “Since you are Secondary Progressive…” I must have had an expression of shock on my face because she said, “Now don’t go home and mope about it!” My neurologist is smart and my advocate – she just isn’t the most tactful.  But I don’t need tact. I need intelligence and someone willing to go to bat for me, which she does. So in 2 short years, my diagnosis advanced to Secondary Progressive Multiple Sclerosis (SPMS)  - which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without relapses. Most people who are initially diagnosed with RRMS will eventually transition to SPMS.

There are four main types of MS. RRMS, SPMS, PPMS, and PRMS which you can read more about here.

My MS is unique to me. As Margaret Mead said, “Always remember that you are absolutely unique. Just like everyone else.”