Hello, I’m new to this so bear with me. I’ll try and keep it brief. My partner started with the symtoms of MS in Sept 2012, totally out of the blue. She was officially diaganosed around Feb/Mar 2013. Since her first symtoms she has continued on a rapid decline. Throughout her diagnosis I have been waiting and hoping for her to her some sort of remission but it hasn’t happened. She’s had numerous courses of steroids, including very high doses intravencley. She’s had a plasma exchange. She was on avonnex for about a year and she has recently started on Fingolimod. Nothing has stopped her decline. She lost the use of her legs in Sept/Oct 2013 and that hasn’t improved. Other than hospital appointments she hasn’t been out of the house since Sept 2013 as she can’t sit up for long or go on car journey’s due to a terrible pressure and pain in her head. She’s displaying ALL the symtoms of severe MS described on this on this site and has done for a while.
Initially she was diagnosed with relapsing remitting MS but we haven’t seen a remission. The specialist says that she having attack after attack in rapid succession. It’s awful to see how she’s suffering and I want some sort of light at the end of the tunnel. She seems to have got worse since starting the fingolimod. She was only 36 years old when diagnosed and is only 38 now.
I hear a lot about people with MS who only have a few relapses or go long periods between and essentially lead a ‘normal’ life, this has not been the case with my partner.
Has anyone been through a similar situation and more importantly did it improve?