Every neurological patients has gone through the tests. Touching your finger to your nose and back, walking heel to toe, toe to heal, tuning fork and pin prick. Then there is the one you stand up put your arms out in front of you and close your eye…do you topple over? I do. I do when I’m home getting dressed and I momentarily loose eye sight because the shirt got stuck and down I go. Why? It’s the loss of…
I was asked today by my physical therapist how are you? I am sure anyone with a chronic disease thinks this is a loaded question. Actually a good friend of mine called me the other day and said, “I’ve learned so much about you and what you deal with on a daily basis from reading your blog. I never knew. Some of it makes me laugh, some makes me feel so bad that I can’t help you, but I never…
Should I say Happy Anniversary to myself? It was an after work doctors appointment January 21, 2016 when he said “ENOUGH”. He knew since the summer before I was getting worse, I was the one in denial. On January 22, 2016 I called my job and said my doctor is putting me out on disability and I never was back. I kept pushing and pushing to continue to work. I was working part in the building and part at home,…
As expected I was extremely tired after. It’s because of the large amount of Benadryl that is given. I was in bed asleep by 9:00. I’d love to say that was unusual for me, but during the week that’s my normal bed time. I woke up with a little stomach ache. That can be a number of reasons but it is listed as a side effect of the rituxan. I don’t remember it from any of the other times I…
Third time I’m being infused with Rituxan. I was able to change my infusion place back to my home town instead of NYC. Saves at least 3 hours of the day. I got here at 9am and it’s 9:57 IV is just beginning. Why an hour? Well they didn’t get the doctors orders. Now it is a federal holiday today so getting in touch with the doctor wasn’t going to be easy. Her office at Mount Sinai in NYC is…
It’s amazing how a day can turn. There comes a point in the evening with multiple sclerosis my body just has enough. My daughter has learned this point well over the years. It’s when she asks me a question or tells me she needs something at 8-9 at night but my mind and body is fond and shut down. Instead of responding like a normal human being I loose my marbles on her. That happened a little early last night…
I decided to go a little honest about our pharmaceutical world of MS. There has been so much press and promise over this new drug coming out for multiple sclerosis. Put Ocrelizumab in your web search and you’ll get article after article about the promise of this new drug. NEWS FLASH!!!! Rituximab is Ocrelizumab The patent on Rituximab expired in the US in 2015. Basically when they were doing the clinical trials with multiple sclerosis by the time they were…
let’s be real here, if things were going well, I’d still be working. I’d go to work everyday, be around different people, be challenged, strive to be the best and probably be like 76% of the world, stressed out. However, I’m not well, I’m not stressed out like the 76% but my life isn’t easy. I love the look I still get from some people when I tell them I don’t work anymore. You can see their mind questioning you…
http://sumo.ly/moZo I submitted a link to the biotin research/clinical study that showed that it may be helpful in people with progressive forms of multiple sclerosis. I am writing from my own perspective from taking the medicine. I get a 100mg pill I take 3 times a day from Ace pharmacy https://highdosebiotin.net . I just completed my 3rd month. I had a neurologist check up in December and in my timed walking, I was 7 seconds faster than I ever walked in her…
yesterday was a bad multiple sclerosis day. I know those happen too. After my rant I posted, I fell. I’m very grateful I didn’t hurt myself but I’m more grateful that the glass vase that broke wasn’t one of the ones my mom painted. I did break a vase and knocked over a vase that held all the fresh lavender I had still from my sister’s wedding 7 years ago. The little pieces of lavender ended up all over me…
