Clinical Trial-  Acceptance to Infusion #3

I apologize that I haven’t given you guys an update via the blog yet.  Drum roll….. I was accepted to the trial and I have received my first two infusions.   I’ll give you a little break down of what goes on during these appointments.  My baseline 25 step test, 9 hole peg test, clinical evaluations were established. This is the jumping off point. Hopefully these scores will improve as the trial goes on. I see the doctor ever three appointments, and go through longer evaluations, including your standard neuro poking and prodding. The doctor is nice though. I was … Continue reading Clinical Trial-  Acceptance to Infusion #3

Clinical Trial for the Regenerative Medication Elezanumab- A patient’s perspective

Are you interested in becoming a guinea pig for scientific research?  I never was, until something dramatic happened to me to change my mind.  Here’s a little background. I have lived with relapsing remitting multiple sclerosis for 15 years.  I hit the lottery, the one you don’t want to hit. I was diagnosed at the age of 20.  This was in 2004. I was one of 200,000 people in the USA diagnosed with MS.   Not the lottery I wanted to win, but I was stuck with the prize.  There wasn’t any giving it back. I went on the disease modifying … Continue reading Clinical Trial for the Regenerative Medication Elezanumab- A patient’s perspective

What’s one of your Happy and Treasured Memories?

In a recent live chat in MS Buddy, Kathy Regan Young, MS Buddy Guide, asked buddies to share one of their happiest Memories- this an expanded version of what I shared : There is a pretty waterfall, surrounded by lush deciduous forest. Construed amongst all this green is a rust tinged, tannin rich pool of water. A wide waterfall plunges over a bed of rocks bordering the pool. Through childhood this was a summer oasis we hiked to. A decent day hike, it was at least three miles descent into a verdantly treed, and mica strewn trail. Humid mist surrounds … Continue reading What’s one of your Happy and Treasured Memories?

The Ups and Downs of Day to Day MS Symptoms

I was diagnosed at 20 years old with RRMS.  At first I just had fatigue, some tingling, and numbness that came with a relapse and went away.  On a hot day when I was walking I would feel some tingling, sometimes I would get a little fatigued, but everything still felt mostly normal. Then at 22 I had a major relapse that made me walk like a drunk at a university where drinking was against the rules.  A week later I had horrible back spasms that were very violent and almost seizure like- though I was conscious and very aware … Continue reading The Ups and Downs of Day to Day MS Symptoms

MSguided Bits

I began my life being called Elizabeth. When I was a baby, my toddler brother could not pronounce the complicated name my parents chose. It came out “little bit.” At five, being called Little Bits, Elizabeth, Bits, Bitties, Little Bitty Bot, Little Bibby Pie, and Infrabit daily, I finally confronted my mother and asked her, “What is my name? Jonny’s name is Jonny, Jimmy’s name is Jimmy, who am I?” She told me that my name is Elizabeth Rhianna, and all the rest are nicknames. I said I wanted to be called Rhianna because it sounded like a princess name. … Continue reading MSguided Bits