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…
Two amazing things happened over the last two days that I have to tell you about. Yesterday I actually swam in the pool. I do the shorter side of the pool as opposed to the length for safety reasons. My poor aid doesn’t want to have to deal with jumping in and trying to save me where I can’t touch the bottom. There I was, back and forth and back-and-forth for almost a full half an hour in the pool….
Leaving behind all the BS that got me to the second infusion, let me finally talk about the infusion itself. Unfortunately it wasn’t the full dose of 600 mg. This specialty pharmacy ordered 300 mg so in two weeks I’ll be back again to take the other half. This is the way you would start Ocrevus. The second infusion was supposed to be a full dose. However, the infusion is basically the same. After they find a good vein for…
Some how, someway, we are on the way. IV line in but still waiting on medicine. Happy to say my veins cooperated on the second try. Now the pharmacy called that they only had 300mg of the Ocrevus when the orders clearly say 600mg. Now they are calling my doctor for clarification. Where the other 300mg is coming from, I don’t know. I will continue to add to this post. So I once again am doing a half dose of…
(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…
It just dawned on me, that February 14 was my 20 year anniversary with MS. It was the weekend of February 14 that I was moving it to my house with my ex-husband. My left leg started to feel numb. The numbness started traveling up my leg through my muscles. I wasn’t just numb, my muscles were becoming week and atrophied. It was The following Friday I went to a family doctor who sent me immediately to this neurologist. To…
Good morning and happy Wednesday, middle of the week, hump day. I didn’t have my view yesterday. It was so much fog out here I couldn’t even see the water. Today I can see the water so I am automatically happy. Sitting down with both of my dogs on my lap and feeling good. I started taking the DoTerra vitality vitamins and supplements over a week ago. My review so far is it’s a lot of pills. However, for me,…
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,…
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…
