We decided to do a round of steroids. I discussed this with both my neurologists. Throughout my years with MS, I would average steroid infusion treatments two times every year. That is why I was on so many disease modifying therapy drugs for multiple sclerosis, I always had relapses despite taking these medications. I hated steroid infusion. I hated the side effects. I hated the withdrawal. I refused to taper after the first few years dealing with steroids. Going from…
It’s my birthday tomorrow. 51!!! I’m middle age. I think my body has been middle age since I was 43. That was when multiple sclerosis hit me with the last relapse that started my path of true disability. It’s been 8 years since that last relapse. It was when I was switching from Tysabri to Rituxan. I made the mistake of stopping Tysabri because I actually had the thought of switching to an experimental drug. I needed to be off…
Today I have a very long MRI. It is of the brain, cervical and thoracic spine with and without contrast. I would say this is probably at least my 22nd MRI since being diagnosed with multiple sclerosis over 22 years ago. I am no stranger to these tests. I have actually had numerous life epiphanies during my MRIs over the years. One was when I decided I wanted to be a bookkeeper/accountant. I started to look in the papers for…
I wrote this blog post on November 7, 2016. Almost 4 years ago to the day. I was originally going to just link it in this post when I realized I would probably be repeating the same general things. Obviously Covid has made my MS daily activities null and void but I’m not complaining. Truthfully my MS is much different 4 years later. I’m mostly in a wheelchair now. I’m in a new place, not my apartment anymore. Things are…
It’s funny because all my complaining last week about NOT getting my infusion leads to this: I feel awful. Please, please give me my medicine. Pump me up with all this shit so I can feel lousy.  kind of makes you wonder what the hell I was I fighting for. All anxiety for four days straight. All so I could feel horrible. Rituxan Infusion Finally Done but still wasn’t smooth. It never fails someone always asks me, does it…
How are you feeling? Seems that this is always the question asked by everyone that knows me. Today, I asked myself. I have written many blogs about lack of sleep Sleep deprived, many about accidents A horrible and humbling outing, and even some on actual feeling How are you feeling? The truth about Parethesia, but it’s been a while since I actually said how I was feeling. I’ve had multiple sclerosis for 22 years now. My disease modifying therapy is…
For my wheelchair evaluation, I’m going out…my wheelchair evaluation my neurologist needed to submit a letter of need. Due to the coronavirus, we did this via teleconference the second week of April. He’s been my neurologist for 22 years. He has files upon files upon files on May. We laugh, actually, at how many times my files have been thinned and moved to storage. My file still always remain as thick as medical encyclopedia. I explain this so you know…
I guess this is kind of like a part two to yesterday’s blog before I was diagnosed. https://multipleexperiences.org/2018/06/25/before-i-had-multiple-sclerosis/ What I’m not going to write here is about my attack in 2014 that really disabled me. What I am going to say is what I would change if I could go back. Again hindsight is 20/20 but this is for the newly diagnosed and people more on the early side of their onset of multiple sclerosis. When your first diagnosed, it’s…
It wasn’t always a battle. I remember at 40 I was still walking pretty good. I’d have a limp every now and then, when my legs were tired, but an outsider would never know. I’d have occasional bathroom accidents that I used to hide, but back then it was easier. Most of my symptoms were invisible. My balance was never great and I wasn’t running any marathons. Hell, I wasn’t walking any marathons either but I was nothing like I…
As promised it was the first question I asked my neurologist. She explains that the study had 93 people in it. According to the study, over the course of a year, of the 93 people enrolled something like 20 of them had relapses that I never had a relapses before. That’s why they deemed that the high does biotin was not effective. This is the information on the application for the withdrawal. http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/004153/wapp/Initial_authorisation/human_wapp_000247.jsp&mid=WC0b01ac058001d128. Well my doctor explained that she, as…
