what if?

Hi, I saw my neuro last week and I am having an mri next week. She explained about the mcdonald criteria. I have a couple of lesions. One in left frontal lobe, and an area of activity in spinal cord, o bands in csf. The initial symptoms were pins and needles and ms hug. Hug went but was left with burning in hands and tight feeling on arms. That over time has progressed to feeling like I’ve hit my funny bones, feet burning,and painful,feel like walking on a slope and now pain in my calf muscles. My neuro said its ms but cannot confirm until changed mri or another flare. She said that it may be same lesions causing problems so there may not be any change on mri. Where would that leave me? Could it now be progressive? I take pregabalin but feel pain always and exhausted even when I wake up. Still working. Still managing the mile walk to work and back each day but by 6 I’m asleep and if I have a busy day I have to get a lift home. Any help?

Telling the difference between progressive and relapsing remitting MS can be tricky when someone is exhausted and having lots of symptoms :frowning: For example, my diagnosis went from RRMS to SPMS within a year or so, but when I stopped work, my MS settled down and I was clearly RRMS - pushing myself to carry on at work had confused things.

It sounds like getting your meds sorted out might make a big difference to you - living with chronic pain is exhausting :frowning: The max dose of pregabalin is 600mg a day. So could you increase your dose? If you are already at the max, then it might be that a change of med or an extra one would make the difference. Best to speak to your GP, but you may want to try the neuro’s secretary first because your GP may cop out of prescribing something without neuro approval.

It might also be sensible to see if your employer could make some adjustments to help you manage your workload better too. Would working at home or changing your hours help for example? You could also try Access to Work - perhaps it would be possible to arrange transport to and from work?

As far as your diagnosis goes, I would have thought that the new symptoms in your feet are worth a new MRI to see if anything has changed. If there are no new lesions, then I would assume that the neuro would leave your diagnosis as “probable MS” and continue waiting for another episode or new lesion(s). If there are new lesions, then the diagnosis should be MS, but it may be a bit of a waiting game to be sure what type it is.

Karen x