@Mererid 

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Mererid

RRMS Disease Progression

Hi everyone, Apologies if this topic has come up on the board before, I haven't been mangaging to keep myself up-to-date. As an MS newbie with so much still to learn, I would really like to hear from people who've had MS for a while and have some stories to share about the progression of your RRMS from diagnosis to where you are now, especially if your MS was relatively mild to begin with, and whose progression have been slow. Was there a time when this changed? To give you some context, I'm 34 now and I was diagnosed with RRMS two years ago, after experiencing symptoms for 6 years previous to diagnosis. I also have Ankylosing Spondylitis, which contributes to the stiffness. Like many others, fatigue and cognitinon cause me most problems day to day, along with achy legs, hyper-toned muscles and muscle twitches. There are a few other niggles too, as is with everyone. Apart from these on-going symptoms, though, I haven't had what I'd term a proper relapse for a couple of years, although there have been a few 'pseudo-relapses' that have lasted a few days before disappearing completely. My MS Nurse is quite sure that these were not relapses, just little flare-ups caused by temperature/viruses/old lesions etc. I feel like my MS is mild and the Neuro has kept me away from DMDs as he thinks they'll have a negative effect on my quality of life, seen as I don't get many relapses. I was really happy with this decision in the beginning, but I have no idea if this is actually the right thing to do or not. I treat every symptom as they occur, and I could not function without Modafinil, pain-killers or Citalopram. Believe me, I've tried. I've cut down from working full-time to working part-time, which helps a lot with everything, apart from with finances - which is another post altogether! I've recently started lifting my head out of the sand, and I've been thinking more about the future. I guess it's due to a number of reasons, but everything is starting to feel more like a battle physically and I worry what will happen if this continues as my support network is quite small. As MS is so unpredictable, it's very hard to foresee the progression of the disease - same with everyone. At the moment, I feel like 'I'm getting away with it', if you know what I mean, especially when I read how much others are suffering on here. But I wonder, how long will this last? I'm worried that I'm lulling myself into a false sense of security, only to wake up one day, hit with reality. Don't worry about giving me reassurances, I just want to know the realities of what other people have experienced. When did you notice things taking a turn for the worse? Anyone else not on DMDs, even after a good few years? Anyone been lucky enough to not experience relapses very often? Many many thanks - diolch yn fawr iawn (Welsh ;-) ), Mersen
@Caterpillar

Hi, One thing is sure: every MSer is different. Having said that, MS is more likely to be mild at the beginning than later in the disease and even mild disease has a nasty tendency to progress with time. Some lucky people stay "benign" with minimal disability after several decades with MS, we are talking of maybe 6-7% of all MSers - so I would not count on that. And even "benign MSers" with minimal mobility problems often have other problems ( fatigue, problems with memory, depression, executive functions etc) which make life difficult and cause early retirement. Best bet:opt for treatment earlier rather than later and hope for the best (= no progression) :-) PS I have made some mistakes in the past and hopefully learned something from them - now day four of Gilenya :-)

@Graham100

Hi mersen. No one minds people asking the same things we have herd before, always new people wanting information, but remember not many of us are experts, but as the experts don't seem to know much, you may as well listen to the people that know how they feel, I started DMD January I was walking using a stick for balance. Since starting injecting, iv got much worse, using crutches or wheelchair can't walk length of my lounge without having to grab something I stopped injecting about month going back this month, msg ms nurse said was going to stop, she said no prob see you Nxt clinic. Problem is unless I could go back to jan start again without, will never know so it can all be a bit of a gamble, some will say start meds early, others say the toxins in the meds are worse, I wish I could go back 2 years when I was dx, thinking I was bad then and took what ever they gave me, I would like to only be that bad now, your choice. All the best.