@lemtrada-uk 

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lemtrada-uk

Lemtrada- being patient

Ive had my first course of lemtrada this summer. Its been 3 months post treatment & I can certainly notice an improvement in some symptoms. Certain symptoms have had a massive improvement, certain others have only been a marginal improvement whilst the rest of my symptoms have seen no change. I met my neuro who explained if any symptoms are still present a year after treatment then there is little chance of that symptom getting better. Its tricky for me to strike the balance between being positive and realistic. Just wanted some words/stories of encouragement. What are others experience post lemtrada treatment? The main symptom which I've noticed no improvement in is my mobility. I go to the gym regularly & work on my core strength. Yet I still walk with an uncommon gait & I walk very slowly. My balance is still poor & I randomly grab on to walls or furniture for support. The symptom which I've noticed the biggest improvement in is my ability to urinate. I used to suffer from hesitancy where I couldn't urinate independently (this was my most recent MS relapse). Thankfully I can control my bladder again. No need for a catheter. My speech is clearer and requires less effort by me. Its still not fantastic but it is better than it was 3 months ago. The interesting symptom is fatigue. My tiredness and desire to have a sleep is still there. When you are sleeping more than your toddler son is when you need to change lol. What I've told family and friends is that I'm giving my body the best chance of recovery by listening to my body and resting. So whilst my fatigue seems as bad as its been, my ability to concentrate (mental fatigue) is much better. I can now follow a conversation & understand it (well most of it lol).
@TracyD

@lemtrada-uk I know plenty of people who've had improvements after Round 2, i've seen improvements myself in my stamina and strength so I would challenge the statement 'if any symptoms are still present a year after treatment then there is little chance of that symptom getting better' :-) One of the things that's helped with my balance is using a vibration plate on 'shake you to bits' speed setting, I do a lot of standing on one leg with my eyes closed when nobody is watching me with a wall close by to hang on to. I've found that it's something I really have to practice continuously, if I stop for a while I get 'wonky' again. We have a roatational balance thing at the MS therapy centre in Reading which is fun to play with to check my progress (I can stand on it without holding the rails and I don't fall off it now) Things really do continue to get better - prove you're neurologist wrong and rub their nose in it next time you see them :) LOL xxx

@lemtrada-uk

Thank you for the words of encouragement. Was your improvement gradual or was it more noticeable at the start? Standing on 1 leg with my eyes open is challenging as it is let alone with my eyes closed. I guess i need to continuously attempt it and hope for improvement. Do you go for lots of walks? I used to but my physio advised to keep my walks short as when I walk for longer than 5 minutes my form goes out. My hips start swinging & my body starts swaying. Also I struggle when I'm faced with different gradients. Walking on a flat surface is much easier than uphill or downhill.