Hi, I’m just newly diagnosed with RRMS. I’m 31 and have 3 very young kids. My neurologists thinks I should go for lemtrada but it scares the life out of me. Anyone tried it? My main symptom is severe dizziness which I’ve had for 9 years now.
Hello,
I received Round 1 of Lem in August, having been diagnosed Active RRMS in June after an episode of numb toes. Whilst the side effects scared me, MS scared me more and I wanted to fight back as hard and fast as I could. The infusions themselves were easy to receive (nothing worse than a mild headache fixed with drinking water and a rash fixed by anti-histamine) - and I’ve not suffered with any post infusion flare-ups, problems from steroids or infections. It’s too early to say whether I’ve picked up a longer term side effect (eg thyroid problem) but I’m confident the monthly monitoring means any issues should be caught early enough to render them manageable.
I’ve written a little bit more about my experience on the “newly diagnosed” thread below - and am happy to answer any questions.
Resources I’ve found useful are:
(1) the lemtrada, alemtuzumab treatment for MS in UK Facebook group (full of people discussing experiences in the lead up to, during and post treatment). It is a helpful way of seeing the range of experiences people have (good and bad) and touching base with people receiving treatment at the same time as you or who have been treated previously in the same hospital as you.
(2) David’s campath journey - 12 year blog written by a chap who was in the original trial and is doing well. This gave me hope when I was first diagnosed and set me on my lemtrada journey
(3) tracy d’s lemtrada journey - very detailed diary from a lady who has just received her second dose and is doing very well. Tracy is very open about her experience and has become a bit of a champion for MS - and has been interviewed for bbc radio on her experience (she posts on Shift MS)
(4) ted talk from Ellen Marshall - talks about a mindset shift she experiences upon getting into cross fit, and how the courage this gave her helped her face her ms diagnosis and receive her Lem. Ellen posts in the FB group (and shift) and posted a video of her matching her PB in an incredible power lift less than a year after MS diagnosis knocked her off her feet. I saw this just after diagnosis and, as I also lift, it struck a real chord with me (I made my personal trainer watch it).
Hope some of that is helpful.
K x
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