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mybrainhurts
3 years ago

I’m very curious to hear/read the responses to this topic since I’m facing the exact same decision. I’ve been diagnosed with “mild MS” (two minor episodes/relapses in 2+ years, MRIs done early November 2014 and 6 months later show no progression or change) and I’ve been advised by the neurologist that I could either sit and wait (and obviously try and live a healthy life, which I do regardless anyways!) or that I could start using Tecfidera. They haven’t given me the option of anything like Lemtrada.
I know that every case is individually different, but I’d like to hear some opinions… many thanks in advance!


stumbler
3 years ago

Now that is a question!

MS is a degenerative neurological condition, which suggests that it will get worse. But the prognosis is far from clear as there is no set course. It affects different people on different ways.

The treatments for MS are powerful drugs which may, or may not, make you feel better. And there is the side-effects, some of which are fatal. Although you would be closely monitored to mitigate those risks.

There isn’t a right or wrong answer to this question. Most MSers will be pro-treatment, some will be anti-treatment and others will suggest that you wait and see.

The bottom line is really down to you. What would you be most comfortable doing? And when you feel you have an answer, then discuss it through with your Neurologist.


krissie2012
3 years ago

Hello,

As Stumbler said, that is quite the question. I opted to start medications very quickly, as my neurologist suggested it as the best course of action for me. Everyone is so individual, I think you should make the decision with the input from your neurologist, and close family members.

Good luck with your decision. I have now been on 4 different treatments. Keep in mind that not all DMDs give the same results to everyone. You have to find the one that works for you if that is the route you go down.


Anonymous
3 years ago

Simple answer is yes. “mild” or benign MS can only really be diagnosed many years after your first attack and if you look at the statistics the number of people considered with benign MS goes down to about 5% or something like that after 20 years.

I’m newly diagnosed, very well and with no disability. I’ve opted for the strongest treatment as I’m trying to safeguard my future.

Its a personal decision but please do your own research before making your mind up.

Barts MS Blog is an excellent resource and very informative.


Anonymous
3 years ago

cameron
3 years ago

I was put on treatment right away and it’s kept me OK. DO READ the MS blog suggested by Sandwich, but be aware that it’s a big read- it’s only by following the daily posts for a few weeks at least that you’ll begin to get the flavour of what’s going on in the research world. The team that writes it is (I believe) a group of 20 research scientists, led by the Professor of Neurology at Barts and the London. They’re looking at viral causes of MS among other fronts, but the blog gives you interpretations of worldwide MS research literature plus first hand comments on clinical issues e.g. how MSers are responding to the drugs. One of the interesting things I’ve picked up is how unevenly neurological advice is given. The point is made that with the new therapies available, MS treatment is becoming far more specialist than it was even five years ago and many neuros are not up to speed with what’s happening on the ground. Treatment should be more personalised and multi-disciplined but sadly, is often not so. They talk about the two attitudes to treatment – 1) ‘safe and wait and see’ and 2) treat aggressively from the beginning to achieve what they describe as the holy grail NEDA (No Evidence of Disease Activity). There are graphs showing how these two approaches pan out in terms of disability progression over years…. once you see these, you may find your decision is easier to make!! It’s also the place to tease out the pros and cons of each drug, with data on side effects. You can also write questions about/comment on any post, although the neuros don’t respond to every single one. A good place to start might be to use their ‘search’ function to read up existing posts on NEDA.


mybrainhurts
3 years ago

WOW, thanks a lot for the responses, very useful! I noticed that I should’ve added “I work in IT and I generally trust solid scientific research and numbers!”, so that MS research blog is exactly what I was looking for! Thanks again 🙂


mumofmser
3 years ago

Hi my daughter just been diagnosed so know how you are feeling regarding watch and wait or hit it hard . There seems to be no quick treatment path though. Having being diagnosed 4 weeks ago we are now on a 14 week waiting list for the specialist centre. She is 17 so even those with the most to lose in terms of life ahead with potential disability aren’t seen sooner. Guess it gives one time to mull things over !!!


webbexpress
3 years ago

Lemtrada is 3rd stage treatment according to my Consultant (asked her on Tuesday) so only used after no progress on stage 1/2.

I have a similar decision to make where I’m mostly healthy outside of a) occasional relapses and b) an underlying increase in fatigue.


marks
3 years ago

It’s an incredibly tough decision and everyone’s story/illness is so individual. I’ve decided to hit it hard and have opted for Lemtrada as I was lucky enough to be offered it as a first line treatment. I was fortunate that I got diagnosed within 4 months of my only relapse to date and with no new MRI activity rather than the classic ‘wait and see’ approach that so many people have had to go through with traditional diagnoses.
The problem with MS is we forget how debilitating it is when we’re between relapses. I’d rather hit it from all angles rather than wondering about the ‘what ifs’ further down the line.


krissie2012
3 years ago

I like your approach @marks Personally, that’s what I would choose to do if I had that option. At the moment I’m on Tysabri and it is doing what it says on the box. Slowing my relapse rate. I was diagnosed very quickly (within a month of my first relapse) and then had two years of trial and error until we found a DMD that worked for me. That worked for about 7 years, then stopped. So all in all I’ve had 4 DMDs and would love the chance to get on Lemtrada.


Anonymous
3 years ago

@mumofmser

I’ve heard paying privately for a consultation can help get you where you need to be quicker.


reddivine
3 years ago

Totally depends on your doctor. And your symptoms. I was fairly stable for over 10 years and was given NOTHING for MS.
Only recently have I been given Gabapentin for neural paraethesia.
You only recently been diagnosed and newsflash! this will be with you for LIFE, so theres no magic pill. Manage without as long as you can.

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