I have had MS since 1992 with very mild flares. Then last Nov/ Dec I had a horrible one and now I have to walk with a walker. I have been on Avonex, Rebif and most recently Copaxone when I had the flare. I have my first Tysabri infusion this Monday. Please has anyone gone from not being able to walk unassisted to walking on their own? I am devasted. I always thought I had a mild form of MS then BAM, I can not walk now. I am trying not to go into a deep depression but I have had to quit a job I dearly loved and just sit at home all day (I can't drive either now). I can't handle it. Please does anyone have any positive news to give me some hope? I am mourning the lively outgoing person I used to be. I am JC virus postive but I don't care...if I get PML, I get PML...I am totally ok with it if it happens because I can't live like this!
Hi Lori. I hope you are feeling better now.
I am trying to help other people who are currently going through, or are about to start a treatment with any form of Interferon, including Intron A, Roferon A, Pegasys, Betaseron, and others.
I set out to collect other patients' personal experiences with the drug, particularly how they coped with the side effects. I started interviewing people online but they were somewhat reluctant to share. In the end I interviewed four patients, and added my own experience with Interferon treatment. I asked them some questions based on what I would have liked to know if I was looking to learn how it feels to be on Interferon.
Besides the interviews, I also added some basic info about Interferons and what diseases they are used for. I hope this is of some help to you.
You can find the book here: https://www.steadyhealth.com/interferon-side-effects
It's completely free but, "Please, spread the word!". If it helps you, it might be of great help to someone else too.