I was diagnosed in 1999, mainly because my husband (of 1 year) thought my walking was odd - fine on the flat, not good on anything vaguely hilly. I also had something I now realise was a relapse that year. I had an MRI and a probable diagnosis straight away. Deteriorated a bit over the next seven years, but didn’t have any more relapses. I was offered interferons in 2006 but turned them down on the grounds that I wasn’t having relapses and they didn’t slow progression.
I had my second relapse in 2007 and my walking deteriorated a lot - I could no longer walk the mile to my child’s school and got a tricycle so I could bike there safely with my toddler in a seat on the back. I had another relapse the next year, a couple the next year and then went to three a year. During the relapses my walking got very bad, also my bladder control and I would be extremely tired. After the relapses, the tiredness would go and my walking and bladder control would get a bit better but not back to where they had been. I also had muscle spasms in my legs at night, not particularly associated with the relapses. I started using a stick in 2010. I went back to a bicycle when my youngest was old enough to cycle on his own and have cycled almost every day since. I now have a bike with a motor to help me get going but try to do as much under my own steam as possible - I am sure that exercising as much as you can slows down deterioration.
I started taking clomazepan for the muscle spasms in 2011 and have tried various drugs for the bladder problems, I’m on Vesicare at the moment which helps but not enough. I went on Tysabri in September 2011, during a relapse and have probably had another two relapses in the eighteen months I’ve been on it. I went through a very bad patch in September-October 2012, when I needed two sticks to walk, was really struggling to get my feet on the pedals to cycle and was sleeping several times in the day. I started on Fampyra in November 2012 and, within days, saw improvements in my walking, cycling and how much I needed to sleep. So now I’m back to a place where I’m coping, looking after my children and the house, seeing my friends, being a governor at my child’s school. I don’t feel confident about the future and am waiting for an appointment to talk about estriol, a hormone they are testing for women with MS in the US.
I have tried lots of alternative therapies - accupuncture, Swank diet, Best odds diet, cannabis, LDN, helminths (that’s worms that burrow through your skin and live in your gut) - all of them for at least a year, some for several years. It never felt like any of them helped.