Hi, just wanted to check if anyone else has experience of this.
I am 48, diagnosed with RRMS in January, but I suspect I’ve had it since my early 20s…Over the years.I’ve had recurring bouts of uveitis, stiffness, pins and needles and variously ‘diagnosed’ as having mechanical back pain, arthritis, etc.
Anyway, after conclusive evidence from MRI and lumbar puncture, I definitely have MS.
So after a scan in June my consultant (I’m in Northern Ireland, by the way) said the lesions looked inactive, therefore I shouldn’t start treatment. But, everything I’ve read says that it is best to start DMTs to slow progression.
On a day-to-day basis I’m not too bad - pins and needles, tinnitus and fatigue, so maybe he’s right?
Has anyone else received this sort of advice from their consultant? Should I get a second opinion?
Any comments/experiences would be gratefully received.
Helen
are you having definite relapses and then things improve - that is, is it definitely rrms.
If your ‘type’ of m s is rrms then I think you should be pushing for some treatment. If the consultant thinks it’s spms then there are fewer options re suitable drugs.
Hi, yes, definitely RRMS. I get the impression he thinks maybe it’s not ‘bad enough’…but obviously I would prefer to get treatment to stop it getting worse.
Hello Helen
As Cracowian says, if it’s definitely relapsing remitting MS, then you should be offered a disease modifying drug. But if your neurologist thinks your MS is not active (ie, if you aren’t having relapses), then I can see his point. It is very much a cost/benefit decision to be made. By which I don’t mean the cost of the drugs (that’s irrelevant). I mean the potential for reduction of relapses and severity of such (the benefit), versus the possible side effects (the cost).
So if you’re not having relapses, then taking the chance of side effects might be considered too great. But if you’ve had a clear cut relapse within the last year say, then you should probably argue that you qualify for a DMD.
If you have an MS nurse (hopefully you do, if not, phone your neurologists secretary and ask for the contact details), ask him/her for help.
Best of luck.
Sue
Thanks Sue, that makes a lot of sense.