I’ve just returned from my annual appointment with my Neurologist. I’m lucky that I now see the MS lead in my area, an MS specialist who knows more about MS than I do. You’d think we MSers take that for granted wouldn’t you but you’d be wrong! It took me years to get to see him and I’ve seen muppets in the past with only a vague knowledge of MS so I’ve wasted a lot of time.
Anyway, he’d looked at my latest MRI scan, compared it with last years and confirmed there are no new lesions lurking under the surface to cause havoc in my body. This is great news and given that I only had one MRI scan in the previous 8 years of “treatment” I was reassured that he did, indeed, know what he was looking at!
He described my condition as “stable” and seemed pleased with this observation.
I asked him about trying new medication options as I recently stopped taking a drug as the side effects outweighed any unseen benefits. He told me he’d struggle to justify the expense of funding new treatment and this raised the dreaded question in my head.
I whispered meekly, “does that mean I definitely have Secondary Progressive MS then?”
He shook his head and gave a dismissive wave of his hand and stated, “I don’t believe in seeing MS like that” and explained that he never labelled people as all MSers are different and another scan in 6 months’ time may well indicate and justify a need for further medication.
How refreshing to find an MS specialist who refuses to believe in SPMS! I’ve read about this rare breed before, who believe MS is MS and that labelling people is unhelpful. We all know that to be declared SP means the treatment options dry up and we’re effectively thrown on the MS scrap heap. My “progressive” MS hasn’t actually progressed in years and I now have two shiny MRI scans to prove it! Hurrah.
He also said he’d chase up the referral he made to physiotherapy at last year’s appointment! I know the NHS is strapped for cash but waiting a year for physiotherapy seems excessive. I suppose that’s a rant for another time!
Another exciting possibility is being considered for clinical trials that will be coming out soon. That’s an advantage of seeing the MS lead in my area as he really is in charge of what’s going on!
I’d love to hear your opinions of MS labels. Are they helpful or not?