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Are your relapses very similar or very random?

Hi everyone, hope you’re sat/laid comfortably

I was just wondering about how my next relapse might affect me. I’ve had 2 main relapses in my career(just over four years) and both roughly started the same way. My firsy relapse started with numbness in my bum and resulted in numbness from the waist down, and my second started the same way and resulted in numbness from the chest down, both with an array of problems but pretty much the same, apart from being twice as bad the second time around.

So, my question is, is my 3rd relapse gonna be similar again but more intense? Has anybody else noticed a pattern/similarity with their relapses or are yours totally random? Also there was roughly a 2 year gap between my 1st and 2nd relapse and now another 2 years later should i be preparing myself for number 3 or are we just in the hands of the gods.

Any replies would mean i haven’t just put my hands/arms through 10mins of aching for nothing.

Alex

My first and second were entirely different but only 6 weeks apart. My first was huge with lasting impact but my second was just sore skin followed by numbness on the opposite side whereas my first started with an intensely itchy forehead, where I was scratching until it bled, day and night for 3 weeks, my face dropped (like bells palsy) and I was left with a weak left leg and numbness down to my left hand from my forehead.

Mine are pretty random. I speak with hindsight, since I believe most of my relapses occurred before I was diagnosed. Sometimes I thought I had an injury (not always the same place), sometimes I thought I had some kind of virus.

I think it’s pretty futile to try to predict either the nature or the timing. One thing’s for sure, worrying doesn’t help MS. Relapses don’t run to a timetable, like buses, so getting anxious because your next one’s due/overdue makes no sense. It’s totally random, so risk does not rise, the longer you haven’t had one.

The symptoms of your last couple of relapses point to lesions probably being in your spinal cord (they will affect sensory and/or motor function from the point of the lesion down).

However, that doesn’t mean all your relapses will always affect your spinal cord. They may simply have more dramatic symptoms, because the brain can sometimes reallocate work to minimise the effects of a brain lesion, but in the spinal cord, there’s no potential for that - nerve signals have to travel up and down the cord - there’s no other route.

Tina

Hi Alex

Mine have always been random in both timing and nature.

The ones affecting my spinal cord seem to take a lot longer to recover from and Tina’s explanation is spot on. Until the inflammation dies down there will be a problem relaying messages between your limbs and your brain and each time the spinal cord is affected there is the risk that some scarring will remain meaning some permanent damage (hopefully mild at first). For instance after my first relapse affecting my spinal cord I was left with almost constant tingling in my toes/feet to some extent. I had a further relapse in March this year and my feet still go numb as soon as I have walked 100m. It’s improving all the time though, it’s just a bit frustrating when you live so near a beach and want to go for long walks …

For me, this is why it was so important to start DMDs as soon as they were offered. I went 3.5 years without a relapse after starting on Rebif so I believe it is working for me.

Tracey x

Both. My MS has some favourite bits/systems that it likes to return to, but it is also very good at finding fun new things to break. I gave up trying to outguess it long ago.

Alison