@hollylb10 

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hollylb10

Just a thought on relapses!

Reading through my letters from the hospital again I read a letter from the neuro who specialises in DMTs who I was referred to to discuss treatment. He gave me the treatment he felt was best for me, which at first I was upset about but then after reading up about it I came round to the idea and thought 'yeah maybe this is best for me' What stood out to me in the letter was my relapses....it says if I have a major one before Christmas, making it 2 in 1 year then he would review my treatment and lemtrada would be considered. What is the difference between lots of frequent and small relapses to one 'big one'? My regular neuro stated in her recent letter that I clearly have an active disease as I present new symptoms each time I see her! I have probably seen her 4/5 times since January. There seems to be no measure in all of this for suffering, how much suffering do MS patients have to go through before they are considered for more aggressive treatment? In my eyes it's all about money and budget...we all have a price tag set to us!
@TracyD

Every relapse, big or small means more scarring, more damage to your nerves in your brain and spine. Big relapses are the ones that can be devastating to you physically, the little ones whilst outwardly not too much bother cause more and more scars and bigger scars in your brain and spine. You have seen your neurologist 4 times more that I have since January, and I got Lemtrada as my first treatment as the others were not suitable for me with existing medical problems, and that regular injections would make my job difficult. You fight for treatment NOW - you don't wait to be offered it - The longer you don't have a treatment to slow (tecfidera, tysabri) or stop (Lemtrada) MS in it's tracks Relapses are MORE SCARRING in you brain and spine EVERY TIME and whether you're experiencing a series of annoying things that quite honestly you'd rather ignore, or one day wake up and your sight is fucked or your legs no longer work properly it's accumulation of scarring. You either stop it or you sit back and wait until it pisses you off so much that you'll do something and by then it might be too late. Just my thoughts, but this is WAR - either fight for yourself or hide in a hole and hope it will not be too bad mostly while you hope someone else fights for you. I'm sorry if that sounds harsh, I don't mean it to be, but what you're describing is how my MS started, my sight, my legs, and now I've had the first part of my treatment - it's all remitted - completely. I will do this every year for the rest of my life if I need to by MS can quite frankly DO ONE - I've no interest in tolerating it, I see every week what people who didn't fight it look like at the MS therapy centre and I will NEVER be like that xx

@Margarita

This whole "wait and see" thing, especially when it's not what the patient wants, makes me...think unpleasant thoughts about medical professionals ;) I looked for the specific guidelines on the MS Trust's Decisions website, but that only says Lemtrada can be prescribed for active relapsing remitting. There's more detail on the guidelines here: https://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/lemtrada If you're not sure that you're getting the best possible treatment, the one that's right for you and for your future, arm yourself with as much information as you can, get a another opinion, and push push push. Unfortunately, as my fabulous GP taught me, you often have to make a bit of a fuss to get the best out of the system. OR - we posted at the same time - pretty much what @tracyd said! I was trying to be diplomatic, but sometimes the plain old truth is what's needed. @tracyd is my idol.