Forum

Early relapse advice and experiences

Hello everyone,

I was diagnosed back in September, having had my first episode in 2012 and my second in April 2017, which ultimately led to my diagnosis.

My consultant at the time said that I would not be given DMTs unless I have more than one relapse within two years.

Unfortunately, at the weekend (it is Wednesday now), I woke up and my right foot was numb by Sunday this had spread up my right leg (with numb patches on my left leg) and by Monday I was almost completely numb from the waist down (there are some patches that are OK). The numb sensation is only skin deep as I am fully functioning aside from this.

I called my MS nurse yesterday who is seeing me at the relapse clinic on Friday and has said that this certainly sounds like another relapse instead of a flare up of old symptoms.

My question for all of you is what sort of relapse experience did you have after diagnosis? Have you found that you relapsed relatively soon after your initial diagnosis? And is there anything that you think would be useful to bring up with the MS nurse based on your life experience?

Thank you so much in advance

Sam

Sam

Honestly some MS nurses are a bit rubbish at communications. As if it could be a ‘flare’ up of old symptoms when you last had a relapse in April. Personally I hate the word ‘flare’. To me, it’s either a relapse or it’s a continuation of symptoms which have stayed with you since the last relapse (ie incomplete remission).

If it’s a new symptom, which has stayed with you for more than 24 hours or a repeat of an old symptom (more than one month since you last had that symptom) then it’s a relapse. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/relapse

I used to be told that in my local area, they tend to give people steroids only if they had a ‘disabling’ relapse. But I suspect this is slightly faulty advice (and they may not follow it now anyway), certainly steroids tend to work quite well when people have optic neuritis. I think it depends more on whether you want them, how many times you’ve had them and local practice.

I’m really not sure how my relapses went in the early days. To begin with I had 5 years between onset of MS and diagnosis. During this time I had quite a few relapses, but since I knew nothing about MS, didn’t really take much notice of them. I just pretended I could see properly when I had double vision, was clumsy when I dropped things or fell over, and drank more wine when I had spasms in my legs!!

You should keep in mind that everyone’s MS is different. We have some symptoms in common, some aspects of our disease pattern the same, but ultimately MS is an equal opportunities disease: it treats each of us as individuals regardless of diagnosis.

To me, this sounds like your second relapse this year, so you should/could be demanding DMDs. If you want them (my feeling is that two relapses in a year is saying quite clearly that prevention of more is desirable) then you should be asking at the relapse clinic for them. If you’ve not looked at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid have a look at it and at least familiarise yourself with the different drugs.

Best of luck with it. I hope your lower half recovers soon.

Sue