Posted by Becky
I was taking some time to digest the news I got earlier this week, but I just read Leif's last post, and see that it could have people worried about me. So I want to reassure everybody that I'm fine, and that I'm going to be fine. I do, however, have Multiple Sclerosis. It started causing numbness and tingling in my left hand sometime in March. For a while the numbness went all the way to my left foot, but everything's back to normal except my arm and hand. My hand has improved quite a bit, too; I can type with it again, although I'm still better off handwriting right-handed. When I bend my head forward, I can feel an electrical buzz down my back, the backs of my knees, and into the soles of my feet. Woo! That's the most disturbing symptom. My hand feels like I slept on it wrong, except that the feeling doesn't go away.
I have a new neurologist here in Brunswick, John Taylor, who was recommended by the neurologist I saw at Dartmouth-Hitchcock. He's starting me on Vitamin D and B-complex vitamins right away. I'll start taking medication to reduce the likelihood of relapses in a couple of weeks, after a bunch more test results come back. This drug, called Tecfidera (dimethyl fumarate), was just approved by the FDA in late March 2013. So I'll be kind of a pioneer taking this stuff for MS outside of clinical trials. Its advantage is that the side effects are minor. While MS is a new indication, people in Germany have been taking it for psoriasis for a while without long-term ill effects.
MS is idiosyncratic in how it progresses, so nobody can say how I will be doing a year or ten or twenty from now. I'll do my best to become informed about MS; I still don't know that much about it at the moment, other than that getting treated sooner rather than later is really helpful, and that it doesn't generally kill you. I'll do what I can to take good care of myself and not let this get the better of me.
I was taking some time to digest the news I got earlier this week, but I just read Leif's last post, and see that it could have people worried about me. So I want to reassure everybody that I'm fine, and that I'm going to be fine. I do, however, have Multiple Sclerosis. It started causing numbness and tingling in my left hand sometime in March. For a while the numbness went all the way to my left foot, but everything's back to normal except my arm and hand. My hand has improved quite a bit, too; I can type with it again, although I'm still better off handwriting right-handed. When I bend my head forward, I can feel an electrical buzz down my back, the backs of my knees, and into the soles of my feet. Woo! That's the most disturbing symptom. My hand feels like I slept on it wrong, except that the feeling doesn't go away.
I have a new neurologist here in Brunswick, John Taylor, who was recommended by the neurologist I saw at Dartmouth-Hitchcock. He's starting me on Vitamin D and B-complex vitamins right away. I'll start taking medication to reduce the likelihood of relapses in a couple of weeks, after a bunch more test results come back. This drug, called Tecfidera (dimethyl fumarate), was just approved by the FDA in late March 2013. So I'll be kind of a pioneer taking this stuff for MS outside of clinical trials. Its advantage is that the side effects are minor. While MS is a new indication, people in Germany have been taking it for psoriasis for a while without long-term ill effects.
MS is idiosyncratic in how it progresses, so nobody can say how I will be doing a year or ten or twenty from now. I'll do my best to become informed about MS; I still don't know that much about it at the moment, other than that getting treated sooner rather than later is really helpful, and that it doesn't generally kill you. I'll do what I can to take good care of myself and not let this get the better of me.
Slightly understated as a "plot twist"! When you're not tired of reading medical stuff, check out the website for the Vitamin D council. They have a number of articles about the use of vitamin D in MS and cancer, among other illnesses. The docs who make up the council are quite adamant that our RDAs for vitamin D aren't nearly as high as they should be. Dr. Taylor is great! You're right, there is no telling what version of MS you have; it's defined by your pattern of relapses. As if you and Leif need more medical excitement in your life! Thinking of both of you, Paula RN
ReplyDeleteThanks Paula, I'll check out the website! At least I have my medical-excitement drill down by now. :-)
DeleteAlthough my compulsive note-taking habit is not what it was ...
We love you Becky. Very sorry you are going through this, but am glad you are having this tended to. You need pampering, too! You've been so awesome through it all!
ReplyDeleteThanks Beth! I've been pampering myself as much as I can. Leif got me some fudge made out of caramelized honey, on his trip out to DHMC with his mom this week. It's wow, so good!
DeleteLooking forward to your visit this summer!
B12 and folate are very critical; B12 levels should be over 600 and in some cases, if you have been deficient for a while, over 1000 to remain asymptomatic. Folate should be above 20. Vitamin D should be between 60 and 80.
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