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My first ”bad” relapse, what to expect?

Hey guys,

I’m Niko, 23, dx in 01/18 with mild RRMS. So far I’ve had 7 mild symptoms of which 4 were 100% healed, 2 were 70% healed and 1 was not healed at all. I have accepted these symptoms to be permanent since they are several years or at least 6 months old.

I’m in a pretty good state of mind with my MS and I’ve been dealing with it but now I’ve found myself from the middle of a some what ”bad” relapse. I’m using ”s because my MS is pretty mild to begin with and I have not lost mobility or anything like that. Its just that this is the first time I’m experiencing a multi-focal relapse, meaning that multiple different areas are affected.

So the relapse in question consists of 4 different symptoms. Firstly I have constant tingling sensation in my left ankle. Second my back feels uncomfortable and little bit weak. Thirdly my right leg feels slightly weaker and last my left arm has occasional twitches and is feeling stiff most of the time. The first two symptoms have lasted for around a month now and the last two for two weeks. All of my symptoms have healed a bit but then stopped healing. Does this mean what I have now will be permanent?

The fact that I’m struggling with this might seem stupid to you if you have more severe MS than I have. Its just that I’m pretty new to this and because of my MS is quite mild I’ve had the mindset that I’m almost healthy, so now that I have a lot of symptoms I feel really broken. Do you guys have any tips for me? What can I expect? What is the average length of an MS relapse? My doctor says I can’t harm my chances of recovery by doing exercise but I feel like its making it worse. Any help would be greatly appreciated! Thanks!

hi nico

speak to your ms nurse and ask for a referral to a neuro physiotherapist.

they will advise you on exercise but also know what ms does to you.

most physio is based on pilates and strengthening the core, which will support your back.

steroids are usually used for relapses but i, personally, do not like taking them.

carole x

Hi

Relapses are not all the same. Sometimes remission can take months whether you do or don’t choose to take steroids.

I’ve generally tended to take steroids if a relapse affects my eyesight or mobility, but for sensory issues, or if too much time has gone by since the start, then I’d tough it out. Steroids are notoriously tricksy little beasts, sometimes they work, and sometimes they just don’t. Their aim is to shorten the relapse, not to cure it. Which is why it’s not worth taking them if the relapse is several weeks old. If you can catch it in the first few days, they can work miracles.

Often relapse symptoms take so damn long to get better, or for other nerves to compensate for the damage, that you don’t notice the improvement until one day you suddenly realise the pins and needles (or whatever) is feeling better.

Definitely take Caroles advice about physiotherapy. It’s always a good idea to strengthen your core, relapse or no relapse. It will pay dividends for years to come.

If you’re not taking a disease modifying drug (DMD), then think about doing so. You may have ‘mild MS’ now, but you have no idea what’s hiding round the corner. Taking a DMD is like having an insurance policy on your car. You may be the best driver in the world, but that doesn’t stop some idiot driving into you. Equally, you may be as fit as a fiddle, eat well, do exercise and do everything you can to stay well, but you can still have nasty relapses.

I hope it gets better very soon.

Sue

For the last 4-5 years I have constantly asked my MS clinic if I could go onto DMD’s but each time they say NO, simply because I’ve only had the 1 recorded relapse !

Ok I may have had only the 1 “recorded” relapse but I can definitely show that I’ve progressed, my GP thinks I’ve probably had more than the 1 relapse, but more than likely minor relapses but not severe enough for the MS clinic to record them ?

Also, and this is my biggest argument, I’m the 3rd person in my family to have MS, alongside my sister & 1st cousin, so I think theres a good argument to offer DMD’s, but again the MS clinic do not think so.

Their argument NOW is that I’ve probably “transitioned” to SPMS !

Surely if I had been put on DMD’s when I first asked I may not have had these “minor” relapses and possibly not then progressed to SPMS ?

Annoyingly, in some of the letters I get back from the clinic after an appointment, they (MS clinic) sometimes call my MS, “SPMS” or “Transitional” and even, “SPMS WITH Relapses”, so if that’s the case shouldn’t I still be offered DMD’s ?

After all it’s the "WITH" relapses that we need to control !

Thanks so much for the replies, they were really helpful! Yeah ok I will ask for a referral :slight_smile: And yeah I take DMD:s, just started them. Okey so next time I have a bad relapse I will immediately go get the steroids!

I’m glad to tell you that my repase has started to go away…! My tingling sensation in my left leg has healed and so has my back. My arms are still stiff but they are improving. Right leg still feels bad. But I’m hopeful and doing better, thanks again guys!

Good to know. Stay well and relapse free.

Sue