have been recently diagnosed with RRMS but to be honest I think it maybe a very slow burn PPMS (my neuro is a great telling you after you hit the wall, previous MRI in Nov 2014 had repaired and he said I had a “low” chance, 5 months back in his office for a diagnosis!). Can not really tell as there has been very very slow progression in symptoms/impacts but was told “prognostically” I am in a good place based on:
- MRI: 4-5 brain lesions, 1 neck
* 1 year between relapses - or at least based on when MRI taken, if taken last year sure it would have been there on the neck so think this 1 year is just due to what was MRI’d and when. Brain lesions actually better than 1st one a year ago
- LP was clear
Going into the nurse in a couple of weeks to look at DMDs, got sent a booklet which I have brushed through but just want people’s views and experience. I know each case is different but a scattering of anyone’s input is a useful food for thought in this journey.
My symptoms and impacts are all very mild, to the extent I am almost embarrassed to be potentially taking away resources from others. Occasionally buzzing in right leg/foot, mild hug sometimes on right upper arm/tricep, crunching knees sometimes, mild tinnitus. Still very active, if anything more than so totally able bodied and mind wise than ever.
So not sure do I wait for another relapse and then think about it just concerned the DMDs come with a bunch of side effects which might make me feel like I am going backwards and stuff that then actually impacts my life. To now (touch wood and thank my lucky stars) no impact on movements, working, doing anything so far. Being diagnosed and also getting family on the same page has also reduced stress levels. Just understand that DMDs “can” reduce frequency and severity of relapses, improve recovery of function (if anything only non recovery so far is the slight crunching of my knees from the last one) and potentially alter disease progression. So do I jump in be aggressive now and try and get ahead or wait ? I am starting on the D3, 1000Ui (NHS conservative guideline) but tempted to up it to 5000 Ui and may start on B12.
I know there are no guarantees but feel if I miss the boat I may regret it but feel as things are mild might be better to wait… Got told by one family member enjoy the present (i.e. if “ok” now don’t do anything to impact that) - very easy to say as they do not understand you maybe cannot go back and repair and recover things. Also comment made from someone who cannot think beyond their end of their nose and talks a live fast and die young attitude but does not really understand it. I should ask the question of others what would they do …bet that gets met with slippery shoulders, caveats and excuses. A bit of shorter term inconvenience and impact from side effects may make things better going forward.
Any views on what might be best DMDs in terms of side effects for someone in a mild state at the moment? Prepared to inject if I have to. To me now and in the short term impact on quality of life is most important as seems all DMDs have similar impacts medically so does not seem to be a case of go for the stronger or bigger side effects one comes with more benefits.
The booklet I was sent I will read fully before but am already raising my eyes to heaven with comments on side effects being split into less common (<1%) to more common (>1%), well >1%, is that 2%, 10%, 30%, 50%,90% = vague.com !!!
Thanks all and all the best