My Life With Ms

Short version--Married in 1991, age 22...start of first symptom 3 days after return from city, no friends or relatives...diagnosed after typical series of tests...Neurologist said no kids for 5 years, must have heard have 5 kids cuz that's what I did! ages 16, 14, 11, 7, 5...felt great while pregnant, but had exacerbation after each delivery (any where from 7 months with first one to 2 weeks after last)...was on Rebif for awhile (my 5th was a Rebif baby,) but "flu-like" side effects were a real pain...been on Tysabri for 5-6 months--no new lesions!!!! (and no significant side effects)...I greatly prefer once a month infusion to shot 3x per week, especially with kids in so many activities.  It's late now, but would be happy to share further details, just ask!

41-45, F
4 Responses May 13, 2010

I was DX with RRMS in 1982 at age 25 with a 13 mo old, had 3 more kids, went to college to become a teacher at 38, surviving a very bad marriage all the while. Divorced in 98, remarried in 2000. I began Betaseron in 1995, In 2003 I had a relapse that didn't get better. I'd had only 3 in the 21 years before that and always got better after steroids. My doctor thought I had developed antibodies to Betaseron (without testing) and put me on Copaxone. 18 months later, still getting worse, he switched me to Rebif. In 2006, another Dr. said I had Secondary Progressive and put me on Novantrone for 4 infusions. I had to quit teaching in Dec 2007 due to increased progression and falls at work. Another Dr. tested me for Betaseron antibodies in 2010 and put me on Betaseron again. My Dr. now says Tysabri is much better at stopping progression than Betaseron, has done all the tests, including the one for the JC Virus, and everything is a go for Tysabri. When I get a little apprehensive about it, I stop and tell myself that I've got to do whatever I can to fight off the Monster with whatever is in my arsenal to do so. When I told my husband "Sometimes I feel like just giving up." He said "No, you don't, because you love me.". That, and my faith in God, keeps me going on days when I just don't know anymore. I've got to believe that something I try is going to give me just a little more quality of life to share with those whom I love, and who love me.

I was also nervous to start, but I just found my original "Touch" paperwork and confirmed that I've been using Tysabri for 5 years. PML has been in the back of my mind all those years, but faded in intensity over time. I guess I made up my mind that the stress of worrying probably wasn't good for my overall health and I believe it has been more beneficial to be on Tysabri than not. I think with the recent advent of the lab test for the JC Virus, it will be much easier to keep my mind at ease to be able to check on whether or not I am at risk for PML.
I would say discuss your concerns with your neurologist, ask for the JC Virus lab test, and if you decide to go ahead with Tysabri, relax about it as much as possible about your choice because the extra tension and stress is not good.
I hope that helps. :)!

Your post was a breathe of fresh air. I am very scared to start Tysabri, because of the brain infection. Do you ever think about it being a mom? Is there anything you can tell me that might ease my fears.

I am 34 with one child who keeps me very busy. I was diagnosed with Relapseing/Remitting MS at the age of 17. I am currently on Copaxone and my doctor wants me to try Tysabari, I am really nervous about the med. due to the side effects. I have a 6 year old to raise. Please give me your imput.

I start Tysabari next week, after Copaxone became ineffective. I have a VERY active 5 year old in tow and its the begining of summer, so no staying in and watching movies and cuddling :(

how were the first few months for you and your kiddo?