My Ocrevus infusion is going to be on Monday August 14 now. Not the worst thing. My infusion for Rituxan was scheduled originally for July 17th so the change to the new drug set us back roughly a month. My neurologist told me that even though Rituxan is given on a six month schedule, the drug could last up to 9 months effectively. I feel fine and now I only have 5 days to receive an infusion so I am…
After 8+ years, I have to give up my normal everyday workout routines. I need to find something else that works that doesn’t aggravate my shoulder tendonitis. My wonderful therapists over at physical therapy have started adding in arm exercises to help build up my arm muscles again. The plan is that instead of going 2 days a week to go to therapy 3 days a week. The focus is going to change to building up arm strength to better…
I’m attending a discussion group today for people with multiple sclerosis or care givers of people with multiple sclerosis. It’s a round table discussion group that is lead by two different MS doctors. Many years ago, I was a patient representative for the drug Gilenya. I use to tell my MS story to a group of people either before or after the guest doctor would discuss MS and how the drug worked. I must admit it was a lucrative deal for…
Well found another thing that can no longer be on my list of things I can do, get drunk. Since the last time I actually consumed a lot of alcohol, other than wine, was over 2 years ago, I had no idea. I went out for dinner with my friend last night and had a very, very dirty martini, my new drink choice. No big deal if I had one, might not have been an issue if I stopped at…
Years ago I participated in a multiple sclerosis activity sponsored at the same physical therapy office I go to now. My main physical therapist started the program 17 years back and became the multiple sclerosis therapist of the office. I attended this program he started once and only once. Why? Every person in attendance was in a wheelchair. I was only 2-3 years into my disease and couldn’t face that, wouldn’t face that, so I never went back. Instead I…
I’m pretty sure I had a MS long before I was diagnosed . I had many strange things happen even as a child. When I was in the fifth grade, I got it rash. The rash was only on my hands and my feet, like gloves and socks. The day my mom took me to the dermatologist, I threw up in the bathroom. The dermatologist said I was having an allergic reaction to the virus. My body was literally allergic…
I’m hibernating for the summer. For most people with MS heat is very difficult. It causes fatigue and muscle weakness, spasms and it basically exacerbates all your current symptoms. They make a cooling vest but let me explain what this thing is. First it’s a vest that comes up to your waist so if closed will nicely accentuate your hips not very flattering. Second it’s this light brown/tan color that is just plain ugly. Third the vest has something like…
On December 13, 2016, I wrote a blog about Alpha Lipoic Acid and multiple sclerosis. On July 3, 2017 this article was published in medical news today. http://www.medicalnewstoday.com/articles/318225.php Ive been talking alpha lipoic acid now for 7 months. I still take 2 600mg pills a day. One in the morning and one at night. Alpha lipoic acid started about 3 months after starting high dose biotin. Another Vitamin shown that in high doses has stopped disease progression. Since both biotin…
I’ve been so involved with the transition to Ocrevus, that I haven’t talked about that I was approved for the nursing aide by my insurance.The evaluator put the request in for 7 days but I really didn’t want an aide 7 days a week. I wouldn’t even know what to do with someone here that many days. My caseworker told me, with the multiple sclerosis diagnosis, it is easy to get the increases if needed. I decided on 3 days a week…
Not too long ago I wrote a post about MS and depression how there is a link. I asked my doctor to go back on Prozac, a drug I was on for over 18 years. I stopped taking Prozac along with a bunch of my other drugs when I stopped working back in January 2016. I was just taking so many pills to get through a day, I thought by not working anymore, I didn’t need them all. Well it’s…
