When is RRMS not RRMS?

Not looking for a medical diagnosis here but sometimes the best experts in a condition are those living with it.

After a very dramatic episode of altered sensation down the left side of my body in 2006 which went away almost completely within a few weeks, I was diagnosed with “possible MS” based on MRI and lumbar puncture results.

I chose to go down the route of avoiding doctors like the plague and forgetting all about it. This was fine until recently.

On reflection, things probably started happening in 2016 but nothing obvious - mostly getting more fatigued after mowing the lawn. Then from 2018 a bit of foot drop and taking longer to urinate. Then in early 2019 the bladder issues got steadily worse to the point I was sometimes not making it to a toilet in time. After prostate was ruled out, this led to a neurology referral. While waiting for that, developed altered sensation overnight in left leg. After a week or so, it migrated to the right leg then all sorts of pain and tightness.

Neurologist diagnosed RRMS and started me on Tecfidera while waiting for a new MRI which turns out was “very comparable” to the one in 2006 so good news. Except, in my mind, this didn’t seem to fit with the symptoms.

My point is - none of my symptoms have gotten better over the past year or so and new ones are popping up. Muscle spasms that wake me in the night arched backwards like I’m possessed. More leg pain than ever. Horrible tightness in my ribcage and abdomen which is also getting worse. I only started using a walking stick around 6 months ago for longer distances but now I am using it more and more.

If this is RRMS, shouldn’t things be going into some remission instead of this? I am worried that this is actually progressive MS meaning a worse prognosis.

Has anyone else had such a long duration of ‘relapse’ and still had the ‘remission’ happen?

I have a telephone consultation with the MS nurse soon and will be discussing my concerns of course but hoping for some feedback - reassuring or otherwise. I just want to know where this is all going.

Hello

This is a question that reverberates again and again for many people with RRMS. The problem is that relapses can take much longer to remit than we think and additionally, they may not always completely remit.

So you can still be experiencing symptoms from relapse A when relapse B hits. Relapses are absolute demons in that they can take so long to have any improvements you feel that you’ve moved on to a progressive form of MS. It’s not always so.

I, like you, spent 5 years avoiding neurologists and a diagnosis. Subsequent to my diagnosis I began a DMD but again and again had relapses that didn’t seem to be getting better. I was having more ‘disability progression’ but actually wasn’t having ‘disease progression’.

My MS began in 1997. I began a DMD in 2002. I started doubting my diagnosis category in about 2007. In fact I was still relapsing remitting until a couple of years ago. Even now, my diagnosis is of relapsing progressive. This diagnosis is as much based on the fact that my disability has progressed rather than the disease having become secondary progressive. I still have relapses and they continue to remit. It’s just that the remission is never complete. Or rather, sometimes a specific relapse symptom gets better whilst my underlying disability, caused by previous relapses remains.

For example last May I experienced a clear relapse, my legs just stopped wanting to hold me up and I was having trouble walking at all (my walking was already quite poor so it’s a question of degrees!). I took a course of steroids, after checking to make sure I didn’t have a UTI - always quite important. Within a few weeks, I was back to my normal baseline. The steroids didn’t help with my existing disability, they just helped the new relapse, ie the current inflammatory attack.

I no longer qualify for disease modifying drugs. This is because my diagnosis has changed, my MS has been too long diagnosed and and my disability has increased. I’ve also tried 4 different DMDs and my rotten system suffers bad side effects each time (I think I’m unusual in that I’ve had bad side effects from 4 separate DMDs).

This doesn’t mean that you are or aren’t now in a progressive stage. Just my experience.

In your situation, I’d hold off questioning your RR diagnosis. Once you have a progressive label, the number of DMDs available to you shrinks. In addition, you could be wrong. Just hold on to the fact that you are on a good DMD and if you can take it successfully without bad side effects, then you should be protected from future relapses. If indeed you are progressive, that fact will show itself sooner or later.

Best of luck.

Sue

Hi Sue,

Thank you so much for your feedback and advice. It has genuinely given me some comfort about the whole thing. I need to keep telling myself that things could be worse and to make the most of what I have.