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Lemtrada

Hi Everyone

I was diagnosed with RRMS last month after 2 relapses in the last 16 months both of which resulted in a misdiagnosis of an inner ear disorder as they mimicked exactly that. Eventually on Sept 11th of this year It was confirmed that it is in fact MS. I am left with some distance double vision and my walking balance still hasn’t got back to where it was originally as both relapses seem to have left lingering affects. I’ve lost so much of my confidence and my spirit seems very very up and down. I’m not sleeping well at all (which isn’t helping my balance either as I’m shattered the following day) and I’m terrified of what the future will hold for me…My father passed away aged 49, 25 years ago when I was 21, he had a very very aggressive form of MS and back then there were no DMDs available…this has left me physiologically scared re MS and now that I have been diagnosed too Im thinking the worst some days…although logically I do know that being diagnosed in 2017 is not the same as being diagnosed in 1977,like my dad was.

I start lemtrada in 3 weeks time as I want to give myself the best chance possible of leading a normal life…and I’m just looking for some words of hope and encouragement please…and any advice on my lemtrada treatment and how to manage it would be great…it seems I’m on such a long, lonely road at the moment, I just want my spirit back…

thank you everyone

Joanne xx

I am delighted to hear that you are starting Lemtrada. If I were at the start of my time with MS instead of many years down the road, I think that’s what I’d want too. I hope that you can take some comfort from the fact that you are going to be on a really effective treatment.

You are right about now being a better time than any in the past to be dx: that’s for sure. Which doesn’t alter the fact that any time is a bad time to be dx with MS! But Lemtrada is a great drug, and I hope it stops your MS in its tracks - it can do that, and not many other things can.

Alison

Hi Alison

Thank you so much for your kind words…I really hope you are doing ok

c

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Hey, You may want to join the Lemtrada’s Facebook group (if you haven’t done so yet). You will find that there are many people talking about their experience with the DMD. There are other alternative “natural treatments” that you can do in parallel to Lemtrada by the way. I would suggest that you look into diets protocols for example, as well as into vitamin D (Coimbra Protocol). These are controversial topics however, so I won’t dig further into that (i.e. I recommend you to conduct your own researches on how to leave a healthy life with MS and see what is best for you). All the best to you :slight_smile:

I am doing well, thanks. RRMS since 1999; on Tysabri for the past 6 blissfully stable years. I wish I had reached for the big guns sooner, before so much damage had been done! That’s why I am happy that you are starting Lemtrada before your MS has a chance to get its feet under the table. :slight_smile:

Alison

Hello!

I’m 2 months post R2 and doing well. No real issues with either set of infusions - in both cases back at work/ running/ gym in 2 weeks. No relapses/ progression and my last MRI showed no new lesions/ sub- clinical activity and my lesion loaf looked as though it had “lightened” - so some evidence of repair. Hurrah!

Still way to early to know about longer term outcomes - both in terms of my MS and whether I’ve picked up a lasting side effect - but so far so good and, I think I’m the world of MS, that is a very good place to be. I’m hoping I’ll have helped stacked the odds that little bit more in my favour.

Happy to discuss if you have questions. I’m also on the lemtrada FB group. I’ve put a few more detailed posts on my experience on this forum as well detailing my experience.

Good luck!

Katy

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