My name is Grace and I was diagnosed in July 2000 - and I was worried about Y2K! Silly me. It was the first day of my summer holiday, I'd just gone to sleep and woke up with one side of my face numb. I thought I'd had a stroke, but I was so tired after flying for nearly 24 hours I decided to go back to sleep anyway and deal with it later. Good thing it wasn't a stroke or I'd have some serious permanent brain damage now.
Well the symptoms continued to pile up and I did go to the hospital the next day but it was another 2 days before they finally gave me an MRI and the diagnosis. The steroids were great -- like a miracle at the time. Of course, I had more energy than anyone could handle and drove my friends crazy -- finally settling into a routine of cooking and cleaning for several hours each morning before the IV treatment.
One day, when I needed to travel to a city a few hours away, my friend drove while I received my steroids (with the nurses's approval) in the car from an IV bag hung from the hook where people usually hang their dry cleaning. It was hilarious! People stared and gave me dirty looks, as if I was taking illegal drugs or something! Or maybe they thought I had cancer and I should go and die in private or something. Nothing doing folks!
As soon as I got back to Dubai, the diagnosis was confirmed and I started the Rebif in October 2000. In the beginning the MS was really progressing and in the few months between July and October the number of lesions had increased quite a bit. But as soon as I started the Rebif the headaches went away and even though I relapsed a year later, the new MRI showed remarkable inprovement -- most lesions had already healed. Since then I've had a relapse every two years -- always in summer. So far the effects are limited to numbness -- in the face, or hand or leg -- funny it's always a one sided occurance -- one side of the face, one hand, one leg. Last time it was my clutch leg that went numb but that didn't stop me from driving my manual car anway! Probably just an act of defiance on my part.
I self inject the Rebif 3 times a week and side effects are a thing of the past. No more bruises, no pain, no flu like symptoms, no problem. The only other medicine I take is Modafinil, for the fatigue. Aside from that I take a few vitamins but not as regularly as I should: Vitamin D (I don't like to tan and Vitamin D in large doses supresses the immune system), calcium (allergic to dairy and most MS'ers don't get enough), cod liver oil (anti inflammatory), Vitamin E (anti-oxidant, anti-inflammatory) B vitamins (too many reasons to count) and loads of other stuff. Also I avoid eating too much red meat. When I was first diagnosed I had just lost 49 pounds on the Atkins diet -- lots of red meat. Just prior to my last relapse I had been on the Atkins diet again for a few months. I still use the Atkins plan, but upon my doctors advice, with much less red meat. I really miss the beef Tenderloin -- used to eat it every day..... medium rare........ mooing...........
I've got some questions about Antegren. I feel like Rip Van Winkle here; I was waiting for this drug to be approved a few years ago but I've been working a job for the past year and a half, so I've been out of touch with MS news. Yesterday, when I found this site I couldn't believe it. Antegren was approved; I got really excited until I saw that it was withdrawn.
Today, I've been reading more and more about Antegren and I am confused about something -- When I first heard about Antegren it was supposed to be a treatment administered by IV no more than a few times and then you're done -- BBB re-established, go home, get well. When did it become a monthly treatment? Could this be part of the reason for the deaths that have caused Antegren's withdrawal from the market?
From what I've seen today, Antegren is not being marketed as it was originally proposed. Why has the duration of the treatment been extended? I don't want to think that it was extended purely to make more money, but you never know. Perhaps I'll get my hands on some Antegren and take it as it was originally proposed, save a little money and save myself from dying of side effects.
I've got so many questions, but I'll take my time to find the answers. That's how I found out about Rebif and Modafinil. If anyone has some answers, please share them with me. And if anyone has questions about the long term use of Rebif, I'd be happy to share my experiences with them. There aren't that many Americans that have been on Rebif for this long -- lots of Canadians, very few Americans.
Sorry to have been so long winded here, but I haven't conversed on these topics in a few years and I've got a lot to say. I don't know anyone with MS and only a few of my closest friends know I have it.