Disclaimer- I am not a health professional. The opinions shared in this article are just my opinions. I am also sharing informational resources. Always discuss your healthcare concerns with a medical professional. I have to admit that the coronavirus has … Continue reading The Coronavirus (COVID-19) and the Immunocompromised/ Chronic disease community
Had a wonderful evening, spending time with family. Tuning into life instead of my MS and symptoms helps them feel less present and less pervasive. The problem with MS is symptoms are new or in flux. They don’t always feel the same. For me I have a baseline numbness that blends into the background. If something feels the same your attention isn’t always brought to it. It’s not normal, but it becomes the new normal. You can forget about it and go about your day. However this same baseline numbness isn’t a steady sensation. It is constantly in flux. Picture … Continue reading The New Normal (Old draft I didn’t post from last summer)
What follows is my answer to the question above that I found on Quora The feelings of multiple sclerosis are described by the name of the disease. Just as there are multiple scars there are numerous feelings those create. This moment as I’m sitting here typing this, if I tune into my body I start to feel the numb sensations around the back of my neck, the numbness reaches around. I’m reminded of the imagery of a hand because I can feel it’s fingers and the tingles lightly brush my lips and the skin around my mouth, my cheek. Going … Continue reading What it feels like to have MS
Tomorrow I am going in for my seventh infusion in the clinical trial of the remyelination drug elezanumab. For the first three infusions after I came home I was really wiped out. I rested in bed for two days as much as possible despite having two very active small children. I was exhausted. Infusion number four presented a different feeling. I was no longer wiped out; I felt semi normal, for me. I started noticing some small changes. I feel like my cog fog is much less than it was. My thinking seems a bit clearer, less foggy. It’s not … Continue reading Tomorrow’s Remyelination Infusion of Elezanumab
This morning I found Dr. Brandon Beaber, a neurologist and MS Specialist in Downey, California for Kaiser Permeante. The video is entertaining and it makes me feel good inside to know that he cares enough about the MS experience to … Continue reading MS specialist tries four MS drugs just to experience the side effects first hand.
Hi, my name is Elizabeth, aka msGuidedbits. I have had relapsing/remitting multiple sclerosis for nearly 16 years. It’s been a 15 year struggle; out of two disabling relapses, through fatigue, and managing encroaching numbness. I used to pretty much keep … Continue reading Going Forward: My Participation in the Clinical Trial for the Remylenation Medication Elezanumab
http://www.youtube.com/watch I will try to get a post up soon, but in the meantime watch this interview that I did with Damian Washington on my progress in the clinical trial. 🙏🏼🧡 Continue reading Update on my participation in the clinical trial for the remyelination drug elezanumab .
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
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
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?