Last reply 2 weeks ago
Newly Diagnosed – well worth a read

Several of us here have been exposed to the technical, dare I say nerdy, language. Don’t sweat it if it is gibberish. Start with the intro and conclusion. If you want to know anything specific about terms/abbreviations used then drop a question at the bottom.

This is an interesting peer review – a collection and assessment of the work of others – regarding the best way to approach the treatment of newly diagnosed MS patients.

It is comparing the risk/reward profiles of the increasingly evidence based idea of getting in early and hitting it hard versus the bit by bit, gently does it, traditional approach. The latter is not evidence based but gut feeling.

Have a read if the intro and conclusion if the rest makes you puzzled and cross-eyed. I still remember that feeling, it was like reading a document in Spanish.


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2 weeks ago

@dominics, your finger is so on the academic/scientific/medical pulse on behalf of us non-scientists, it’s greatly appreciated. When I was first diagnosed, my experience was that info was made available when selecting a DMT, but that I wouldn’t be led down a particular path by the medical team. It was up to me, and I went for the path of least resistance to disrupting lifestyle, which was Tecfidera. So, two years on, I seem to be doing OK and have had no serious relapses, so am grateful. But, I have no idea if I made the right decsision, or would have been better served by another DMD. Some local health authorities are a bit more forthcoming with their guidance; as with all MS care in the U.K., it’s a bit of a postcode lottery. Maybe you should host some workshops for the newly diagnosed, simplifying the language of medicine and science to explain how the different DMDs work before people make their choices. Hard and fast versus gentle and holistic is an enormous quandary for the newly diagnosed. When I faced this very quandary, I felt that I was choosing between science and hard facts, versus intuition and principles. When I opted for Tecfidera there was a part of me that felt like I’d sold my soul. But hey ho, have found that you can learn to live comfortably with your decision, whichever way you go! Thanks @dominics 🙂

2 weeks ago

@vixen – you are very kind, thank you.

I have had MS 26y, my first ever ‘proper’ girlfriend has a PhD in Pharmacology ut gave up academia for the much better money of the pharma industry. I picked up a lot about trials from her.

I worked as a rep (salesperson) for several drug companies back in the day. My portfolio never came close to MS. At that tine, the first Beta-interferon trials were running and having a bit of an inside line I kept an eye on things.

It was initially working in the pharma industry that I abandoned all ideas that Doctors were somehow superior. They are moderately clever people who studied really hard at school. Did you know it is much harder to become a vet? My near sister-in-law took up medicine because she couldn’t get into veterinary school.

That said, there are many awesome ones out there. The better they are the more they welcome questions, the more they try to engage you in truly collaborative decision making. They are also questioning themselves and trying to stay ahead of developments. They never choose a point in their career to settle back and choose to function on what they know from old.

I would submit that it isn’t so much of a postcode lottery as knowing how to understand and work the system. I decided I wanted to be on the most powerful DMT available a few years ago. I sat down and worked what boxes needed to be ticked and by whom. I then went about chasing that down. The wheels of the NHS turn slowly and there is a certain ‘academic way’ about operating within them.

It really helped about 6y ago that I chose to go to University (yes, it is wasted on the youth) and gained a BA Hons (2:1) and then an MSc (Merit) from decent Universities with superb supervisors. This has helped even further with understanding the apparently boring technicalities of research and scientific papers. I think there are at least 5 (probably more) better-qualified people here than me.

Nevertheless, I am easily the most outspoken.

I am NOT a medic and strongly object to unqualified people telling other unqualified people what to do. I have opinions that are backed by at least some decent research. I am a firm believer in science and the scientific method. Without that, we rapidly descend into treatment chaos.

People need to trouble themselves to learn more and challenge their medics. Mostly, ‘tell me, why did you choose/suggest X and not Y’, and the favourite of mine, ‘what are the consequences if I follow course X, course Y or no course at all?’ The all-time zinger is, ‘tell me, why did you choose NOT to do X, Y, nothing etc’. I fully expect them to justify choices and actions. Not to hand it all to me and nor I to them.

re Tec – you can read about it. It is probably one of the most potent 2nd line treatments. I was on it for 7 years before I elected to pursue another, turns out it was Ocrelizumab.

FWIW – if I had the money I’d be checked into the main private UK stem-cell centre by St Marys for private HSCT. 80-90k though. I may have to rob a bank. Wanna help?

2 weeks ago

@dominics , I’m sure @vixen would help in your plan for HSCT, by contributing a stocking for you to wear. Or perhaps a pair of tights, if you have an accomplice! 🤣

2 weeks ago

I’ve got a plan in mind.
It’ll make almost a billion….
Just have to buy an old building and put loads of relics in it …
Ahh does the NHS have one?

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