@StevenH67 

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StevenH67

Newly diagnosed with RRMS

Just thought I'd say hi and give a bit of background. I was diagnosed with CIS back in October 2016 at 49 years old after some very sudden numbness from my toes to my waist. Came as a huge surprise as I considered myself fit and healthyish, I had ran 10 miles the day before my symptoms started. Fast forward to Jan 29th 2019 and I got diagnoses with RRMS following numerous MRI scans over the two year (which showed numerous lesions on my brain and upper thoracic spine) and a lumbar puncture (which was clear). I've been given some meds to research and think about. Tecfidera, Lemtrada, Plegridy and capoxone. I know meds aren't one size fits all but any feedback would be useful. Still getting my head around the diagnosis at times. Thanks. Steven.
@DominicS

Gosh, a lot to deal with. I am 50 and have had it more than half my life now. OTOH, a friend was diagnosed recently. They thought it was SPMS but Dr Omar Malik in London things it is an especially odd kind. It falls nowhere in particular.! It freaked him out but he is engaging with the experts and already undergoing therapy. People are very polarised about drugs, often with little evidence other than their confirmation bias - totally understandable - that they have chosen the right thing. No one likes to think they haven't made the best choice, me included. I would urge you to do your research regarding therapies and strategies. The current leadership thinking (the neurologists that are the field experts) is to hit it hard as soon as possible to mitigate further damage. Whatever anyone says about benign MS isn't true. There is enough data and research - some ongoing - to show that however it manifests on MRI etc it is still harming you, regardless. It is about your attitude to risk now, risk/reward calculations for the future and so on. Everyone seems to encounter the ill-informed helpers who all 'knew someone with MS and have you tried XXX' and so on. There are no cures, no alternative medicine that works on anything other than your mental health and lightening your wallet. If the so-called alternatives worked they wouldn't be alternatives, they'd be medicine! I swapped from 7y on Tecfidera to Ocrevus (Jan 2019) because I want to get on the most efficacious available as soon as possible. it is, apparently, better tolerated than Alemtuzumab and isn't available for SPMS sadly. If you can get it now I'd give it thought. I'd also ask the neuro why they haven't put that to you as another potential. There is no firm link between MRI plaque (lesion) activity and physical manifestation of symptoms. MRI has lost its shine as a great, one-size-fits-all tool for tracking progressio0n. It is more part of the mix these days than a solo item. Beware the entirely MRI based feedback. There are some excellent videos on here from the 2018 research meeting called ECTRIMS. The US version, ACTRIMS is going to take place in 2019. Ask anything. Best, Dominic

@Stumbler

Hi @stevenh67 and welcome. A very good answer from @dominics above. Here's some reading material for you about all the available Disease Modifying Therapies (DMTs) and a Decision Tool, which might help:- https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid