@Sewing-chick

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Sewing-chick

Best MS drugs soon after diagnosis

Should your neurologist be offering you the most effective MS drugs soon after diagnosis, before you have any evident disability? The opinion of doctors at Barts (a hospital at the forefront of MS treatment) is that they should. Here's what the doctor said on the Barts MS Blogspot today: " I was asked an opinion about a young woman with newly diagnosed MS who had had two disabling relapses in the last 8 months (optic neuritis and ataxia) and made a good recovery from the attacks as was fully functional. Her MRI has a moderate lesion load with posterior fossa lesions and two Gd-enhancing lesions. When I suggested to her neurologist that in addition to the platform therapies he should also offer her the option of being treated with either alemtuzumab (Lemtrada) or natalizumab (Tysabri). He was shocked and said: 'But isn't that being a bit aggressive, she doesn't have any disability yet'. I had to remind him that she fulfilled NHS England criteria for both alemtuzumab and natalizumab. It is clear that our 'Brain Health: Time is Brain' message is not appreciated by all neurologists. The use of DMTs as a preventive therapy, i.e. to prevent future disability and to maximise lifelong brain health, has not sunk in yet." This is a message for everyone who has been diagnosed with MS in the last year or two. If you receive early effective treatment, your MS may never have a big effect on your life. I think that's what we would all want. Be aware that your neurologist may not offer you the drugs you need - you may have to ask for them.

Sandwich

@Sandwich

Its the path I chose. No disability and want to try to keep it that way for as long as possible. Horses for courses. Trouble is with MS you never know which way its going to go. I looked at natural history studies and decided to intervene early. I chose the most available effective medication based on NICE and EMA data. It was not my neuro's first choice for me and something I had to ask for. He did however respect my rationale and subsequent decision based on my own (extensive) research and (importantly) personal values. I respect the professional opinion of my neuro, but trust myself to make my own decision on what's right for me.

Sewing-chick

@Sewing-chick

I'm exactly with you on that @sandwich. BTW here is the link to the Blogspot information that I posted above, in case anyone wants to read more: http://multiple-sclerosis-research.blogspot.com/2016/07/clinicspeak-brainhealth-predictors-of.html

JuliaM58

@JuliaM58

I was diagnosed early May and my neurologist suggested either Lemtrada or Tecfidera but also mentioned Ocrelizumab which he said would be available next year and was very effective. I think the shock of the diagnosis started my first full blown relapse which I am just getting over, I opted for Tecfidera which I will start in 10 days and have said I would like to swap to Ocrelizumab next year. I hope that it all goes to plan, especially as since discovering this site I am reading so many positive comments about Lemtrada . I am now realising that everything within the NHS takes a long time....it's funny how I have been told that stress can make ms worse and yet most of the stress I am suffering is from worrying about the time it takes to get treatment.....

Sandwich

@Sandwich

I'm with you on that. As soon as I started DMT's my stress levels went down.

TracyD

@TracyD

This message is what I am going to try to get across on Tuesday when I'm in with BBC Radio Berkshire ??❤️

Sewing-chick

@Sewing-chick

@tracyd - I'm really happy to hear that you're going to be on the radio describing your experiences. I feel it's so important that people who are recently diagnosed with MS understand what their options are and that they have a real chance to live without the effects of MS. And that there is probably only a limited window when they can get treatment and see their MS disappear - five years down the road might be too late.

TracyD

@TracyD

@sewing-chick That's what I want to get across the best shot for avoiding disability and progression is to hit hard and fast after diagnosis we are a new breed of MS'ers with so many effective treatments available to us in the relapsing remitting stage of MS which all dissapear once a progressive label is stuck on us. Prevention has to be our first priority to protect ourselves and our futures

Elderflower88

@Elderflower88

Thank you all, this is a really useful post for me as someone currently waiting for test results, it is good to feel prepared if the outcome is MS.