I’m seeing my sister from California today. She’s in for a very, very fast visit to New York and is coming out to Long Island for the afternoon. Yippee. I haven’t seen her in a while, she lives so far. I’m excited to spend some time with her today. First this morning I have to go to the doctor, yet again, to re-do bloodwork. Something where they didn’t take enough blood to get the test they required done. I don’t…
I kicked ass this morning. New workout and I stood on my feet for a record of 18 minutes. Omg!!! That’s incredible. Granted my feet can’t move too much, but that’s ok, that was an tremendous amount of time. In physical therapy, one of the main things they do for people with multiple sclerosis, or people that can’t really stand on their own anymore, is put them in a device that either stand them up or strap them in bars…
It’s been a strange couple of days. I’m finally able to start taking my high dose biotin again. If you read any of my other threads on biotin, and there are many, what mostly showed in the biotin is that my walking speed increased by seven seconds. This is according to my neurological test by my doctor. However I’ve stated, and I still stand by, that biotin helped do more. Besides noticing more weakness in my legs and hip area,…
It’s 20 years that I’ve dealt with my multiple sclerosis. When I first started doing research on my own illness, it was stated that most people go into the second stage of the disease after about 10 years. The second stage of the disease being secondary progressive MS. Most people start off in relapsing remitting and, at the time, it was said that 80 percent of people in this stage will go into secondary progressive around that 10 year mark….
Very frustrating. I’ve now done two separate blood work tests and no answers. The bloodwork my neurologist requested showed six different deficiencies in all my B cells which was expected. That’s what Ocrevus, my main medicine for MS, is suppose to do. The rest of the panel including my thyroid was fine. Two days later bloodwork was drawn from my OB/GYN. Here I was checking to see if I was possibly in pre-menopause. When she called me she informed me…
I received a comment yesterday, on an older blog, about my Ocrevus infusion. What I found interesting is she’s had multiple sclerosis for 36 years and she’s first going on a disease modifying therapy. First of all I have to say, 36 years within any DMT, that is amazing!!! I know other people like that or that have stopped taking any of the disease modifying therapy drugs for a variety of reasons. I never had that option. My multiple sclerosis…
If you’ve never read my blog before, I invite you to look through the search box and find my numerous posts on biotin. If you don’t want to take my word, this is an article from the web with the doctor who has been conducting the clinical studies on high dose biotin in multiple sclerosis. https://multiplesclerosisnewstoday.com/2017/05/09/medday-new-phase-3-trial-and-belief-in-biotin-potential-to-treat-progressive-ms-interview-with-frederic-sedel/ My MS doctor had read the notes on the clinical studies and started me on biotin back in December of 2016. With biotin being a…
Going to the neurologist are usually a bittersweet day. I really like my neurologist in the city, she is a wonderful doctor. I honestly couldn’t ask for more compassionate, caring and understanding for MS. That being said, there’s limits to what could be done for me. Since seeing her regularly I’m on my third MS drug that I started back in September, which is Ocrevus. I can say that I was on Rituxan prior to this and the changes only…
I’m wearing shorts on October 25th in New York. My windows are open in my house but there is no such thing as global warming. Oh please. This is crazy. https://www.accuweather.com/en/us/new-york-ny/10007/october-weather/349727. In case you actually care, everyday it’s been higher than normal this October. I always said I wanted weather like San Francisco 70 degrees and beautiful each day, guess I’m getting it except we get humidity. Yesterday was so humid and MS doesn’t like humid. It’s like starting five steps…
I am finally feeling a little better. I got some Musinex yesterday which helped but the pounding in my head finally stopped too. I still don’t feel great but the fog that swept over my head and body has mostly lifted. I must again say with warning to anyone on an immunosuppressive drug be smart around others with any kind of sickness. I’ve was on Tysabri for almost two years and Rituxan for over a year and a half and…
