Relapse

Everyday living
1

Hi, I’m hoping somebody can help with my recent relapse.

I was diagnosed with RRMS in 2008 and have been generally ok up until now with 1 sig relapse affecting my left arm - I never regained full dexterity. I’ve had smaller flare ups but my legs have never been affected, although I’ve felt unsteadier over time. This could be related to getting older (40) and being overweight.

I have been on Tecfidera since 2015 but came off it a month ago to start Gilenya. I’m currently in the weaning off process so without a DMD.

Unfortunately I have had a relapse over the last week. My left leg has constant pins and needles and is sensitive to sensations such as cold floors. There’s a constant burning feeling. I have been experiencing unbeatably restless legs from my right hip, which is keeping me up at night. Over the last 2 days I’ve started to struggle lifting my right legs e.g climbing stairs or putting my leg into trousers whilst stood up). I went for a long walk today as I hoped the exercise would do me some good but I found walking a real struggle. I was initially able to lift my leg ok but as time went on I couldn’t lift it anymore and it was dragging. I tripped over pebbles. But then I’d take a 15 mins rest and I’d be able to walk unaided again before the dragging started again.

im really confused as I always thought MS affected one side of your body at a time. Although my left leg is experiencing typical MS symptoms, it remains fully mobile. My right leg is not experiencing any symptoms but I’m struggling to lift it, especially when I’ve been waking a while.

Do you think the relapse is affecting both sides of just one? What do I do about treatment? Is it worth starting steroid treatment as I am still able to stand/walk at present.

Sorry about the long post - my MS nurse is completely useless and never responds to messages so I don’t know who else to turn to :heart:

2

hi Schnobee

sorry that you have had a relapse.

maybe you could ask for a telephone appointment with your ms nurse and/or GP.

i was diagnosed in 2008 like you.

you say that cold floors do you no good.

I have burning feet, again like you, but i get out of bed to go down and stand on the cold quarry tiles in the kitchen.

i also have a cooling spray, bought from Boots.

It is entirely up to you if you want to try steroids.

good luck, wishing you a speedy recovery.

Carole xx

3

Hello

It sounds like bad luck has caused this relapse. Unfortunately, sometimes stopping a DMD will spark off a relapse.

And MS is such a contrary beast that it does what it likes. Sometimes a relapse will be all one sided, and other times, bilateral.

My thoughts on steroids are that if a relapse affects walking / mobility, or causes significant pain, or affects eye sight, I will take steroids just as long as I’ve caught the relapse early enough. If the relapse is only sensory in effect, then I’ll soldier on though it. Plus, if it’s been a few weeks then I don’t feel that it’s worth the side effects for only a limited benefit.

As Carole said, try talking to your MS nurse or GP (assuming your GP is switched on enough re MS). As you say your MS nurse isn’t much help, maybe the GP might be better? Or you could try emailing your neurologist (try phoning his/her secretary and ask if an email could be forwarded). Have a look at https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses for more suggestions.

Meanwhile, don’t try to ‘push through’ this relapse. Give yourself time to rest. Hopefully it will be over soon.

Sue