My mother sent me a text yesterday to write down the questions I have for the neurologist. It’s been 20 years, what questions do I still have for the neurologist? I know the research, I know what’s out there and I know what I’m on. Unfortunately, there is nothing for secondary progressive and therefore there is nothing that will stop the MS progression at this point. I’m very positive, but I’m also a realist. I’m not gonna run around with…
Over 20 years I have been on many different drugs. I’ve stop taking things and started taking things. There are many drugs I’ve taken for the MS itself and many for its symptoms. I figured I list all the things I take right now from my MS. I’ve also included links to clinical trials and a couple of drugs I recently stopped taking. Ocrevus this is my main drug for relapsing remitting MS. I take it through an IV once…
(CNN)In a rare move, the companies that make the multiple sclerosis drug daclizumab (brand name Zinbryta) have voluntarily pulled the medication from the market and stopped all clinical studies after reports of eight cases of serious brain inflammation among patients in Europe Read the full article here: https://www.cnn.com/2018/03/02/health/ms-drug-daclizumab-pulled-bn/index.html Each one of the drugs we take to keep as well, has side effects. You have to weigh the odds, the pros and cons of each of these medicines. I’ve been taking…
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…
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…
I think for anyone that has had a chronic illness for any length of time has sat and remembered what it was like before the illness. Or at least what it was like before it got really bad. We remember when we used to dance, run, or have any exorbitant amount of energy. We remember when we taught our child maybe to ice skate or ride a bike. Maybe you remember Sunday afternoon hikes up the mountain. All these wonderful…
I had to be honest and let others know in case it happens to you, I haven’t been feeling great since my Ocrevus infusion on Wednesday. I expected the day of the infusion to feel lethargic and tired because of the Benadryl coming through the IV, but I am still feeling that way. It is Friday morning and anyone with MS will understand me when I say my bones feel so heavy. My skin is super sensitive which is definitely…
I blogged about this months ago. What’s amazing and messed up is I couldn’t get my insurance to pay for Rituxan forcing me to go on to Ocrevus when it cost so much more. I thank my stepmom for sending this to me this morning. It makes no difference but shows how the big business of the pharmaceutical world works. Is it ever only about the disease… https://www.bloomberg.com/news/articles/2017-08-23/how-roche-tweaked-an-aging-drug-to-keep-profits-rolling-in?cmpId=flipboard
The appointment was called for 11 but as I’m walking out my door, I received a call that they still didn’t have the pre-medicine orders from my doctor. After that call was made, yet again, they informed me I can come at 12:00. I got there and it just took time to get things rolling. Except for a TV and a comfy chair, it was an institutional type of room. However, the people were very nice. I knew exactly what…
Finally, after countless phone calls and so much unnecessary stress, my insurance approved Ocrevus. However in their approval, they didn’t approve me getting the infusion at Mt Sinai hospital where I was scheduled. I’m approved to go to a place on Long Island about 20 minutes from my house. Since I just got the approval at 5:30 on Friday evening, there was no way to get me scheduled at the new infusion site for Monday so it will be done…
