Hi all.
A little bit about me. I’m 34, I was officially diagnosed with MS in 2019 aged 30. On Tecfidera to keep my MS at bay.
I wanted to ask you all, how long did you go relapse free for? Whether on medication or not?
I know everyone’s MS is different, what’s your story?
Hi. I was diagnosed in 1999 aged 39 and had many relapses in the early years. But haven’t had one for 11 years now. I get the occasional blip, due to things like an infection, humid weather, having a cold but not what I would call an actual relapse.
I used injectable DMDs for about 15 years and am now on Tecfidera, all of which have been successful. It’s a lottery though and I know I’ve been lucky!
Hope you stay well.
Hi Krestel,
Amazing! That’s so nice to know you’re doing very well. When you’re doing well like this, one can sometimes forget that MS is even a thing!
Tecfidera has worked very well for me so far as well. It’s amazing, I didn’t like the injections!
Avonex kept mine at bay for 6/7 years. Then a few bad and damaging years - less said the better. Then started Tysabri 13 or so years ago and relapse free so far, fingers crossed.
Hello Lab,
I was dx RRMS in 2000 aged 19.
I’m currently on Kesimpta, previously on Lemtrada and Avonex before that.
My longest remission was 2002-2009 (8 years) with no medication.
I agree absolutely, everyones story with multiple sclerosis is unique; it’s good comparing notes.
Best regards,
JP
Diagnosed 5 years ago after 2 bouts of ON a few months apart… Been on Tecfidera and relapse free since then.
That’s amazing to read so many people have been relapse free for a long time.
I believe medication is getting better and some seem to be tolerating it very well.
Amazing!
Good question! I was diagnosed and started treatment (Avonex) around 17 years ago. For some 5-7 years I didn’t have any noticeable symptoms but then started finding it difficult to walk for more than an hour or so. I’m now down to 15-20 minutes or so. It’s been a slow gradual reduction except for last year when in the same week my father died and I got quite bad Covid (I couldn’t use my MS affected leg at all) . The MS and leg was much worse for the next few months and I’m sure it all resulted in a significant drop in walking distance and the beginning of a permanent limp. Did I have a relapse? An MRI in January didn’t detect any new lesions. To be honest I’m not quite sure what counts as a ‘relapse’ as opposed to further damage to existing lesions - along with just getting older (70 early next summer)
Hi Hank.
What I noticed with getting COVID or a fever. My old MS symptoms are reactivated and over time some of them did get better but some never did.
Could this be the case for you when you had COVID? Could that be a reason why nothing showed up on the MRI scan?
Hi Lab, thanks and yes I do think that. Yesterday I was reading a summary of a paper from researchers in Switzerland about ‘silent progression of MS’ . Based on records of thousand of people with Relapsing Remitting the general message of the paper was that for many people with RRMS and without any new relapses their symptoms do get worse over time .
I’ve long has this idea that damage to the brain or spinal cord is like damage to pretty much many parts of your body and there is always going to be an area of weakness susceptible to further weakening
Hi Hank, that sounds awfully like the smouldering MS Prof G talks about.
Hi Retro and thanks for the info. As they say ‘it’s complicated’! Apparently I count as a case late onset MS - over 50 when diagnosed. There seems to be a view that late onset cases progress quicker than early age onset but - after 17 years I’m not doing too bad. There is also some work in Switzerland on ‘silent progression’. No idea How this relates to smouldering lesions ! I’m sure that Covid didn’t help on bit - to put it mildly. And to complicate things further, I am of course getting older - soon be 70 - and my body’s ability to restore, repair etc is declining.
I’m just going to carry on with the treatment ( Avonex) and looking after myself - trying to keep my body as fit and healthy as possible through exercise and diet
Hi Hank, i think Smouldering MS is explained as, No Evidence of Inflammatory Disease Activity (NEIDA) so clear MRI’s but symptoms very slowly gettig worse over time. I’ve posted a link below that explains it more.
Perhaps silent MS is the same or similar, so no outward signs ie. silent.
I was also over 50 when diagnosed and still in good shape, so got to appreciate the small things.
Glad you’re keeping well, hopefully for a long time to come.
Retro.
Hi Retro and many thanks. That’s an interesting and informative paper ( and I’ve signed up to the site). For years now I’ve been following the general guidance of Professor George Jelinek as set out in the Book and Website of ‘Overcoming MS’ . Not offered as a cure but recommendations on diet, exercise, mindfulness/ relaxation - basically to reduce inflammation and support brain health’ . All very similar to Giovannoni. A few weeks ago I also started on intermittent fasting - eating only in a 7-8 hour period each day .