It’s Valentine’s Day here which always marked 3 things for me: The lover’s or lack of one Holiday The weekend I moved into my first house with ex-husband The start of a major MS attack that lead to my diagnosis less than a week later Today marks 21 years ago that I was diagnosed with MS. Crazy!!! Almost half of my life I’ve spent with MS. It is hard to remember the times without the disease. Maybe that’s why I…
I never thought at the age of 47 this would be my life yet I remember being scared when I was diagnosed of being in a wheelchair. I knew what multiple sclerosis could bring about and I feared that when I hit the 10 year mark everything would go downhill rapidly. That wasn’t the case because there were medication developed that helped to slow down the MS progression and more and more have been developed. My life took on a…
I received an email yesterday about a new drug for progressive MS called Ocrevus. https://www.cbsnews.com/video/new-drug-provides-hope-for-those-suffering-with-ms/I don’t get it, I’ve been on Ocrevus for almost 2 years already. Is it really still new news? I wish I could rave about this drug that it has done wonders for me, but it hasn’t. I haven’t had any relapses and for that I am thankful but it certainly hasn’t halted my progression. I am worse today than I was two years ago. That…
My neurologist from early on has done MRI’s of my spinal cord. It is where most of my MS activity has been over the last 21 years. My first major attack back in 1998 left a large lesion in my brain but since than it has really all be spinal cord. So what does that mean? Well I asked my doctor the same question. He said spinal cord is why I have no cognitive issues as I’ve progressed. He also…
It’s was my routine checkup with my neurologist today. One month shy of my 21st anniversary of my multiple sclerosis diagnosis. This appointment was with the neurologist that made that diagnosis 21 years ago. He knows me well. My folder is very thick and over the years it has been thinned out and moved into storage. Every time I see my file it is a reminder how long my history with this disease has been. 21 years. I ignored it…
One of the most common of MS symptoms are spasms. They can range from mild to severely painful. I know many people with both extremes. I am considered mild. I have them in my legs mostly but also in my back. It’s my back spasms that can have the highest degree of range. On a good day I may have a few spasms in the whole day. A bad day I’ll have a few spasms every hour. Even the spasms…
I saw this article on healthline https://www.healthline.com/health/multiple-sclerosis-ms-gift-guide This list was put together by a MS blogger and her blogger community of items they felt were great for holiday gift giving. The article goes into full details of each item and where you can find them. It even explains why each item is a good gift. The holiday gift for a person with MS: Cooling clothing and gear Help around the house Home Entertainment Productivity or adaptive technology Wear for your…
This month they had a few interesting articles on new MS research I thought I’d enclose. https://msfocus.org/About-Us/MSF-News-Articles/167 A new study shows an overlooked source may be able to replace lost nerve insulation and provide a new way to treat multiple sclerosis. The discovery of mature myelin-producing cells’ capacity for repair opens new opportunities to slow or reverse the disease. That may call for new therapeutic approaches that rally the oligodendrocytes to reach out with new lifelines to damaged myelin sheaths….
Going to see my neurologist, on my mind was questions of whether to stay on Ocrevus. I felt if I was still declining so much why be on a drug that can come with some serious side effects. Was the pros still out weighing the cons. I had two other drugs in mind Siponimod and Ibudilast. Both drugs are coming out for secondary progressive. My neuro shot down Siponimod because I was on Gilyenia and it is very similar to…
It is tough. I go to the doctor and my neurological tests aren’t so bad from my last visit. My timed walking was increased by only 2 seconds. No big deal. My range of motion was pretty much the same range as it was last visit. My MRI shows no activity. Yet I’m worse. Everyone who is involved in my daily life knows I’m worse. It’s frustrating. It’s not like my doctor doesn’t believe me. It’s not like my doctor…
