hey guys, I hope you’re good.
in april, my neurologist decided we would not start treatment for RRMS as he felt my lesions were relatively minor and there was good scope for recovery. he gave me a good prognosis, so to speak. only since then, I have had multiple colds/flus, several flare ups of Uhthoff’s phenomenon, and two weeks in hospital with pneumonia in june; it’s not been my favourite summer.
I have just received a letter from my neurologist to say that the most recent MRI in june shows a new patch of inflammation in the brain and the possibility of an enlarged lesion. he also said the lesions do not appear to be active, but that he wants to meet in one month to now consider treatment.
I will admit the news was a real body blow but, equally, I am struggling to entirely understand it: it reads quite daunting in some ways, a little encouraging in others. so any help in understanding exactly what this means, and how I should feel about it, would be appreciated
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Hi @jamesdjgale Not that this will be of any help but I think your Neurologist should have started you on DMT straight away! Absolutely no point in waiting until things get worse before starting to deal with the MS. If it were me I would insist on starting on a treatment as soon as possible. The general consensus these days is sort of ‘hit the MS early and hard (I.e with a high efficacy treatment)’
Sorry to be blunt but If you have MS you will get lesions. Treatments reduce the number and frequency of new lesions. On the positive side , it’s good that you only have one new and a possible enlarged older lesion. When I was diagnosed years ago I was told I have ‘quite a few’ lesions and many of us have multiple.
All the best and good luck
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It is always a blow to read that one’s MS is more active than hoped. Perhaps you can take a little comfort from the fact that the letter isn’t really telling you anything you hadn’t guessed yourself. Not a favourite summer, as you say.
Yes, it’s tough, and I have felt just the same when in similar circs over the years. Nothing for it but to take a deep breath and start thinking what you want to do about it. It definitely sounds to me as if the time has come for medication to keep you well and get your unruly MS back in its box before it does you more harm.
In your shoes, I would be thinking about what is most important to you about treatment. Personally, I have always been inclined to go for the most effective thing offered to me (that is not everyone’s priority, but it has been mine). What’s on offer will depend on what your neurologist makes available to you, and that will depend in part on how he/she thinks your MS is behaving.
As a general rule, I think it’s fair to say that the more effective the treatment, the greater the risk of side effects (the reverse is also true: the less effective the drug the fewer the side effects). That’s just the way of the world with most medicinal drugs, not just MS ones. So your views on how keen you are to hit MS hard might also influence what options you’re offered - the neurologist should be listening carefully to you and where you’re coming from.
It can feel quite empowering to get on a new treatment and take the fight to MS, do to speak. It can feel like taking back a little bit of control.
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thank you for this - a few people actually said similar to you, regarding DMTs. it’s hard to judge it; my neurologist has a sterling rep and is apparently king of his field. equally, I feel his understanding dwarfs his in these matters, so I am inclined to trust him. but I have heard the hard and early thing, and so was surprised he did not start straight away
thank you. my lesions, if I have understood, are not so bad and I feel well enough. but I find it hard to tell definitively - MS is a tough one to understand clearly and thoroughly - but I am glad things are moving now, if nothing else
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thank you alison. it was a huge blow, particularly as he had initially been so encouraging. oddly enough, I assumed I’d go straight on meds and so have researched them all quite thoroughly all ready (kesimpta is my early fave!)
it’s hard to know how much to push your own preferences and how much to trust your consultants. but I am agreed that the most effective thing offered to me is what I will go with. if you’re offered drug x y and z, can you still insist on something else?
agreed - I like the idea that with treatment you can feel a little more protected, and a little less exposed. but he shielded me from treatment for that exact reason: he felt the side effects outweighed the potential benefit at that moment
it’s a headspin..
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In my limited experience, doctors are good at changing tack when the circumstances change – that’s part of the job - in a very real sense it IS the job. as a clinician, you’re not treating things as they were a year ago you’re treating things as they are today. I’m thinking here of the neurologist I saw first 25 years ago who didn’t want to do an MRI scan of anything else with my first relapse but then when my second relapse appeared had me posted into the MRI scanner before my feet had touched the ground. Circumstances had changed, and so did his opinion.
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