Hi all,
I saw my ms specialist yesterday who confirmed he agreed with the original neurologists diagnosis of RRMS.
I went in with good knowledge of the different DMD’s but was surprised he is recommending we go straight in for Lemtrada.
Having discussed and researched it further I completely understand there are huge benefits to this drug and I also understand the risks. But it would be nice to speak to anyone who has actually had it and your opinions on it?
I have been so positive since I had the results of the mri two months ago and I still really am, however the severity of this condition has hit me and it’s really is hard to get your head round!!
Hello
I’m 10 months post R2 and had Lem as my first DMD straight after diagnosis. My only ever definitive relapse was a few weeks numb toes in March 16. I’ve had no issues with the treatment, no further relapses or progression and my latest MRI shows no new lesions. I’ve still a long way to go before I know long term outcomes both for my MS and with regards to side effects - but for now I’m happy and healthy and am happy Lem has given me the best chance of staying that way.
I’ve written a fair few posts on here about my experience which I think should be searchable
The best resource for getting a spread of anecdotal feedback (good and bad, with specifics on the different treatment centres (I was KCH)) is the Lemtrada/ Alemtuzumab for treatment of MS Facebook group. I’m Katherine Goulder on there if you want to find me. Also happy to answer any questions or concerns from my own experience.
Apologies for not writing more now - on a very hot and crowded commuter train on the way home from work!
Kat
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