Hi all, this is my first post so I’m kinda introducing myself too, I’m pretty new here although not new to MS. I was diagnosed almost 4 years ago with RRMS. I’m 32 and have 2 daughters age 9 and 2 and I work full time as a support worker for people with complex learning disabilities.
Anyways, my MS is extremely active and I have very regular flares, I struggle mostly with my balance and vision as well as left sided weakness vertigo and fatigue. Iv been on copaxone which didn’t help whatsoever and am currently on gilenya which I am also still having extremely bad flares whilst on including a recent relapse in November where I lost all feeling in my right leg (I have it back now thank heavens!)
So to my question……. my Neuro sent a letter a few weeks ago suggesting a change in medication and asked me to choose from mavenclad, tsabri or lemtrada, after a lot of soul searching and research I decided on lemtrada, I informed my MS nurse who informed me that my Neuro would need to have a meeting with other doctors to discuss if it was appropriate for me but in her words she “couldn’t see them disagreeing with my dicision as I’m a prime candidate for the drug” so as far as I was aware that was it I was just waiting for them to get everything in order and send for me…. fast forward to yesterday and I get a call from the nurse to say they’ve denied me the lemtrada based on the fact it probably won’t work because I’m “young” IM 32!!! And that they want me to try mavenclad instead.
To say I’m devastated is an understatement, I made the hardest decision of my life to choose lemtrada based on the side effects etc because I really believed it would be the start of my new life and as ms free as I’ll ever be to be told that some people who’ve never met me made that decision irrelevant and are ruling my life for me!
Does anyone know if I can appeal this decision? And has anyone had any good results with mavenclad? Thanks so much in advance and sorry for the essay!
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