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Joined: Jan 14, 2005 Posts: 30 Location: Pennsylvania
Posted: Thu Feb 03, 2005 9:57 am Post subject:
Red wrote:
Hi Michelle,
Any problems with Tysabri? And is it true that once you start you can't come off it? I'm quite interested in this drug but waiting to see how it plays out. Keep us posted and good luck.
Hi Tim,
To answer your question, no problem with the Tysabri infusion itself. I had the IV medication over 1 hour then stayed an addtional hour for observation. After I got home I had a headache and a 1 degree temperature elevation and maybe was a little more tired. The next day, I was fine. I have not read any evidence that shows that once you start Tysabri you can't stop it. If you have any kind of allergic reaction, the drug is stopped immediately and you cannot receive it again. I have read several posts of those who have symptom improvement. The drug does not claim to improve current symptoms, but is preventative, in the way that it prevents more lesions/relapses or further deterioration. I have gathered as much data as possible on this before I began. (Fortunately, I am a nurse and have quite a few resources.) I have found from the webcast (www.mshow.com) that the effects are seen at around 6 weeks. The difference being from a clinical study of those receiving the placebo and those receiving the Tysabri. The MRI results indicated a 92% reduction in active inflammatory lesions per year and an 80% reduction in new or newly enlarging T2 lesions.
I'm due for my next dose 2/8, so I'll keep everyone posted on how it is going.
Hope this helps, Good Luck. Michelle
Posted: Thu Feb 10, 2005 8:00 pm Post subject: New to MS
Hi
I'm new to MS, just diagnosed this past August. I woke up in July with double vision, which ended up lasting a few weeks and I also had some spotty numbness/tingling in my legs and feet, but I don't think I've had any other symptons since October. I say "I don't think" because I also have another condition called Charcot-Marie-Tooth (CMT) and while I don't know much about it, it affects the nerve endings of the muscles and impacts on my mobility. I have an interesting gait, a sorta limp and I guess a drop foot sometimes, bad balance...so you can see that I can't be sure which condition is affecting what. There is no treatment for CMT, it just gradually gets worse over time (diagnosed as a child). Not much info about it out there, doctors don't know much, it affects people differently, no telling how severe or mild it will turn out to be.
I am about to start LDN. I just found out about it while surfing online for infomation. My regular GP will prescribe it and it will be sent to me from a pharmacy in Toronto because there aren't any pharmacies where I live that do custom compounding. I'd rather not start any of the CRAB drugs if I can avoid it, partly denial I suppose, but I hate the idea of on-going needles, the side effects and so on...if I have to try them then so be it but I'd like to exercise a few options. I just had a MRI before Christmas and I'd like to have another in 6 months (being on LDN) and see what happens.
Frankly I couldn't be more depressed. The last eighteen months to two years have been the worst of my life. In this order my mother died, a man I loved completely left my life, I was diagnosed with MS, my father died and I just finished a contract so am currently unemployed. Plus my boy is on the cusp of adulthood and talking about moving out--natural I know, but devestating nonetheless, its always been just he and I since his father and I divorced before he was 2.
I'm very depressed about the MS diagnosis and pretty ticked off too, I figure I already had my "thing", I have CMT, you would think that is enough to deal with.
I'm trying to stay positive, maybe the fact that the stress of my father's rapid illness and death, the unemployment and the empty nest syndrome haven't caused an attack should be looked on as positive...
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Thu Feb 10, 2005 10:13 pm Post subject:
aylish, welcome to the site. I know times are tough right now, but you're a young 36 and have another lifetime to live, this time with all the wisdom from the first one.
ok i'll stop trying to philosophize. I'm glad you're with us.
-a _________________ Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
I have posted on the Tysabri link but I have failed to introduce myself. I am a 42 year old mother of 2 girls ages 17 and 4. I was diagnosed in Jan. of this year and awaiting my first Tysabri infusion. I have had symptoms since '96 but really excellerated after the birth of my second child at 38. I have 3 cousins that also have MS, one was diagnosed a month before me. They are all either my age or older. This diease is no stranger to my family. I hope to share my experience with Tysabri soon.
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Mon Feb 14, 2005 3:05 pm Post subject:
welcome deedee! _________________ Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
Funny, i have posted a many times on here, but just realized never came here to do the formal introduction, i am 29 with 3 children, all girls, ages 11,10 and 5. was dx'ed in 99, currently on avonex, waiting approval for tysabri.and have to say this site is great, everyone has such quick knowledgeable answers. anything you ever need to ask can be asked here without judgement or ridicule. great site!!!!
I'm 25 , dx 3 months ago, sort of by accident - had numb hands , suspected herniated disk, made MRI , bingo. Still lost - no family, no place, no job (in the middle of a grad school), foreigner in the US. Somewhat hopeful for antibiotics and the rest drugs weaponry that I picked up on this forum. ready to fight.
Great forum, helpful people!!!
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Tue Feb 15, 2005 3:28 pm Post subject:
huge welcomes to momto3 (It's great to have the "formal" intro!) and vladFT. Vlad, you're facing some tough external circumstances and we're really happy you've found some interesting leads on here. Thanks for the compliments-- it's always wonderful to hear we're appreciated.
That's what we're about at This is MS-- Hope through open-minded science and knowledge-sharing.
Welcome again! _________________ Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
Posted: Mon Feb 21, 2005 1:16 pm Post subject: oops... still figuring this out
I meant to post my introduction in this thread, but accidentally created a new thread. For the sake of continuity, here it is... sorry for the confusion, I'll figure this stuff out in short order...
************
Hi everybody.
Just lurking around the site and decided it was time to jump in. First an introduction: I am 28 years old, married with one child and another on the way. I was diagnosed in December 2004 (Merry Christmas, right) immediately following a bout of retrobulbar neuritis. After obsessing over a journal and wracking my brain, I think I actually had my first symptom a little while ago in the form of vertigo... not too sure.
This is liberating for me for two different reasons. First, I've been doing a lot of writing to vent my thoughts and feelings... works sort of, but in the end I know no one is there to receive the message. Family and friends (and there are plenty) try to be supportive. They always ask about me, and I know they care, but I can't shake the feeling that they don't TRULY want to know... you can see it on their faces and in how quickly they head you off at the pass by changing the subject to something along the lines of "stay positive." I understand that I'm part of the problem in that I never complain and do my best to mask any problems, so everyone thinks "situation normal." But I know otherwise simply because my every waking thought is about my diagnosis and how I fear it will obliterate the way of life I've always expected and ultimately took for granted... 'nuff of the melodrama.
The second thing about this site that's so liberating is that you guys are opening my eyes to things I've never even heard of. I thought I'd done so much research, yet every posting mentions something new. My understanding was that I had just a handful of choices: interferons, copaxone, tysabri, or caution-to-the-wind roll the dice.
Anyway, just wanted to introduce myself. I'll try not to turn this into my own personal confessional.
Hello,
I'm Terry, a wife, a mom of 3 adult sons, 2 daughter in laws, and a soon to be grandma.
I was diagnosed with MS in 1985. Yes 20 years ago, I have been living with MS since my kids were 4,6,8 years of age. It was not easy, but I grew to know how my MS was changing over the years and what I needed to do to live with the MS.
It was not easy in 1985 to find information about MS at that time. The NMSS did give some info. but it was vague. It was not until 1997, and we had the internet, that I found so much about MS, and other people with this disease.
This is a great site. Very caring. Where I learned the most about MS was a site from another MS'er. It is not a forum, just information about MS. A forum, like this one will help you to get to know others, just like you, and knows what you are going through.
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Mon Feb 21, 2005 8:01 pm Post subject:
Welcome Terry, and thanks for sharing your other favorite sites _________________ Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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i am 29 with 3 children, all girls, ages 11,10 and 5. was dx'ed in 99, currently on avonex, waiting approval for tysabri.and have to say this site is great, everyone has such quick knowledgeable answers. anything you ever need to ask can be asked here without judgement or ridicule. great site!!!!
