I have to say Im so pleased Ive finally found the time to sign up to this forum as I have learnt an awful lot. One thing I have noticed is that people seem to have had several MRI scans.
I was diagnosed in 2001 and had an MRI then I then had a further MRI in 2002 and thats it!?!? I rarely see my consultant and when I last needed to see him was told by the MS nurse that I needed to be re-referred by my GP as I hadnt seen him for several years.
I commenced on Rebif in 2004/5 which my nurse agreed did not benefit me. I continued to have 3-4 relapses a year all just as bad as each other. I just had horrible side effects from the dmds to go with it. I have never been told I have highly active MS but have learnt I have by reading posts on this site.
I camr off my DMD in 2007 so that me and my husband could try for a baby. During this time I wad relapse free for approx 18 months. I was able to walk further etc…
I think I am lucky that following each relapse I recover very well although over the past 10 years the distance I can walk has been greatly affected - but Im still walking.
My MS nurse did discuss going back onto DMDs after I had my daughter but no word about an MRI. I wasnt actually offered a different type like Copaxone, which after reading here seems to have helped lots of people. I decided not to go on Rebif as it didnt help. It also wasnt suggested that I have an MRI to see how my lesions are as Im sure I am riddled with them
I have to admit Im actually quite embarassed as I thought I knew alot about my condition, but after reading here I realise that actually I know very lttile . I started LDN which did have a positive effect, didnt stop relpases but had more energy blah blah blah.
I am currently not on anything as me and my husband want to try for another baby. I did say to my MS nurse last time that we were going to and she suggested after we have to think about Tysabri as she acknowledged that I probably did have highly active MS. I am a little puzzled why Im not asked if I want to try a DMD instead. I presume I would have an MRI if they want me to have Tysabri?
Would love to hear what other people think/advice they may have. Sorry for the long post and I hope it all makes sense.
Thanks in advance, I already feel that I am better equipped with knowledge and actually feel a bit more positive about treatments for the future. x