You know David, I’m kind of in a similar situation. I was relapsing remitting for most of my years with MS. Then it was decided that I was probably SP because I’d had no relapses for a long time. I don’t really know why the neurologist didn’t think a bit harder before calling it SP. He did say that chances were that because I’d had to stop Tecfidera because of low lymphocytes, I was probably being protected from relapses because of the time it took for the lymphocytes to recover.
This year, I’ve suddenly had two relapses. One mostly sensory stuff, but the other a proper motor relapse. I couldn’t move either leg (not so strange with my right leg, but I’ve almost always been capable of moving my left leg!!). Luckily, I already had some steroids (in date!) and the wherewithal to test my wee to ensure I didn’t have a UTI (nb. this is important before you take steroids!). So I took the steroids within about 3 days of the relapse starting. And they worked brilliantly. So well, I even had some improvement for my right leg - after years of it being virtually useless.
So I’ve had an MRI (already arranged for the day before the relapse began - strange how some things just fall into place!), it’s shown active inflammation and two new brain lesions. So the neurologist now thinks he’ll apply for Copaxone for me. (Considered Ocrevus but it’s too risky for me - too many bad DMD reactions!) I’m now classed as being Progressive Relapsing.
But, the guidelines set by NICE are that you should have had 2 relapses in the last 2 years (check), and be no more than 6.5 on the EDSS (Expanded Disability Status Scale). Ie. able to walk at least 10 metres using at most two sticks. I am rated as 7. I can’t walk more than a few metres with a walker. And so I wouldn’t qualify. In addition, the only DMD recommended by NICE for PRMS is Interferon 1b aka Betaferon. Not Copaxone.
So I probably won’t qualify for anything!! It does make you question the neurologist when they cock things up! Unless he’s planning to a) relabel me as RR, and b) lie about my ability to walk. In which case it makes me question his judgement.
At least Tecfidera is doing it’s job for you!!