A couple of questions really. I am currently changing DMT to Tecfidera however I really don’t want to start it. My reactions to my last treatment (Avonex) where awful and as silly as it sounds it’s really frightening me!! Since not being on any treatment I haven’t felt like I have MS I’ve been fine and enjoying life with my two young children. I’ve only ever had one relapse that I’m aware of (like a Bell’s Palsy) this led to an MRI and diagnosis. My consultant just looked at the scan said I had clinicallly isolated MS and then changed his mind (when I said I’d been biting my tongue) and just went oh yeah you’ve got relapsing remitting MS, phoned his nurse and his words were ‘weve Got another one’ I have found him so slap dash and I also don’t feel I can approach the nurses either, I feel like they always fob me off and pushed me into trying Tecfidera which really will not suit my lifestyle at all!!
I was diagnosed during pregnancy (MRI scan done before I fell pregnant) and my little girl is now 6 months old, I’ve only suffered symptoms whilst on Avonex, I haven’t had a relapse since she was born.
I would really like another MRI scan to see if my MS is active before making treatment choices!
my questions are…am I being stupid not treating this now? Would another MRI scan help me in making a treatment decision? I’m so confused and feel the DMTs are so so harsh and I currently feel great not even suffering fatigue which I suffered with so bad when on Avonex!
Can I request to change trusts that I’m under in the hope of better treatment options/MRI scan? I can pay for a private MRI but need a referral and someone who can read it but my consultant has told me he doesn’t believe having repeat MRIs is helpful!!
sorry it’s a rambly one, I’m not in a great place with this!