Quick rundown. On Rebif from 2004 to 2013. Started Gilenya May 2013 but had three sensory relapses on it. Saw a neurologist in January and we agreed it wasn’t working so a new MRI scan was ordered and she said she would refer me to Addenbrookes whatever the results as there was nothing left that they could prescribe. Came off it April 2014 after another relapse. No relapses since or any other symptoms but my fatigue is horrendous - back to 2004 levels before Rebif and obviously I’m ten years older - and I’ve not worked since May. I know DMD’s aren’t supposed to help fatigue but the two I’ve been on clearly did as I was functioning and having a relatively normal life (apart from the relapses)
However, on getting the scan results, the neuro I saw in January decided she didn’t want to refer me but at my insistence and a LOT of pushing, I finally saw a neurologist at Addenbrookes at the end of June as I wanted to be considered for either Lemtrada or Tysabri. In a nutshell, my MS is too mild for either so he ran through my options - the other interferons, Copaxone or Tecfidera when available. Interestingly, he wouldn’t have put me on Gilenya. He discharged me and referred me back to my NHS Trust to prescribe my chosen option.
I have decided to wait for Tecfidera after I spoke to my MS nurse in August and she said it was going to be “October realistically” for it to start being prescribed. We agreed to check in again at the end of September to find out more as they were going to be having a big meeting with the PCT that month about all the people wanting to change drugs which I’m now included in. Since then, I have left her four voicemails…nothing. I have also now left two voicemails for the secretary of the neurologist I saw in January…still nothing!!! Not even a call back!
I’m due back at work next week but there’s just no way I can work right now with the fatigue as it is - plus I’m relatively stable other symptom wise so don’t want to rock the boat especially since I’m not on a DMD. Although they’re really supportive, I need to give them some idea of when I might be returning - it just sounds like I’m taking the piss when I keep saying “I’m still waiting for an update” which is what’s happened for the last three weeks!!!
I just don’t know where to turn next to get some answers…?!! Any ideas welcomed.