Forum

2nd episode or not?!

So I have had symptoms since January this year. And still ongoing. Was just wondering, when does a 2 no episode count, had a relapse twice while in hospital but as not a month it didn’t count.

So my question is, is it from the start of new symptoms or once they go or from what point does the month start?

hi stillmore

god- that’s the million dollar question. assuming you’ve got rrms, i’ve heard some relapses can last months, so you could still be on one since january. im not sure of the ‘less than a month’ suggestion you refer to. i thought new debilitating symptoms signified relapse, but not necessarily if they’re not debilitating… i rely on what my neuro tells me, but its not always clear cut to him either.

i will possibly get shot down for this suggestion, but i believe that a relapse is when a new set of symptoms which are causing significant problems take place en masse. my last (2nd) relapse took place in March and i had visual sensitivity to light, extreme fatigue, affected speech, increased mobility and balance problems, cognition problems. i am now ‘out’ of relapse but still suffer from fatigue, intermittent affected speech, some cognition and balance problems.

hope that is of some help, and to those greater in the know, PLEASE feel free to correct me. everything is a learning curve!

cheers fluffyollie

So Your symptoms are still continuing, can it be permanent? And the macdonalds criteria state about time needed, so even though I go with what you have said, sTill need to know is it from the first set of symptoms or the new ones? Or at what point? Coz I would say if yours are coming n going in a month, it’s still classed as one episode right? I’m newbie to all this soz.

Ive never heard of the McDonald’s criteria. I don’t think there’s anything like a time limit for length of relapses. From my very first relapse (in 1997) it took months to recover. Each person is different, and in fact each relapse can be a bit different, depending on what is affected by the relapse and what treatment you have for it. Your reaction to steroids can vary from relapse to relapse too. I’ve had IV steroids that started working within about 10 days (but the relapse still took a long time to get back significant function) and I’ve had steroids that seemed to do absolutely nothing except give me a nasty taste in my mouth and leave me feeling bruised.

I think if you have a relapse and get partially or completely better over a period or weeks or months, then have new, different symptoms start, then the new relapse starts from the time the new symptoms began.

But you could ask your MS nurse if you have one what s/he thinks.

Sue

The criteria is based on 2 things, time and the demyelination, or something like that. Check it out. Yeh I will ask MS nurse on the 1st july, impatient and thought I would throw it out to the forum lol.

Eh my steroids don’t seem to be working, rid the IV for 3 days and then lower dose IV for a few weeks and now on same but in pill form, and it’s like it’s in waves, every time, I seem to get better a week later I start to “dip” again, is it normal? I know everyone is different but is someone like me? Just wanna know if this is what I am to expect for my life now?

Hi still more what have you been having sumptomwise

The advice from my first Neuro was simple:

If it lasts for more than a day - take note.
if it lasts for more than a week - get on the phone.

Thus, he considered that a relapse could be little more than a week.
The principle of a month between relapses is still valid.

Prior to starting Copaxone I had three relapses in six months. My relapses always took the form of extreme fatigue and had usually cleared within a couple of weeks, so there was always a clear period of more than a month between them.

You are almost certainly different in your relapse pattern, but the principles will still apply.

Geoff

Headache and vomiting after anything, eaten or drunk. Lesion right in the middle of my vomiting centre of brain. Also speech and mobility goes weak n shaky. Also fatigue. Those are the main ones, restless legs (spasms) etc etc. seems it’s one week on and one week off… Only had 8 days of not vomiting since January, been on steroids for about 2 months now and doesn’t seem to be working.

Geoff, that has made me feel a it better that I a, not loosing the plot, how long before inflammation goes down generally speaking?

Now that is a question for all the MS experts in the world - and If two of them agreed I would be surprised.
And indeed, for all of us, the time period will vary.

However, I can tell you the length of a piece of string:
Its twice the distance from the middle to one end.
That is an absolutely correct answer that is totally useless.

Geoff

Hahahahahahha u have made me smile today. Surely though if they did another MRI it would tell if the old bits are going down or got any new ones. I know they say wait 3 months but they haven’t started me on any treatment and I am getting worried that the long it goes on the more permanent it will be. Just bad couple of days and got specialist on Wednesday so trying to stick it out till then but becoming very dehydrated again, which isn’t good.

This is one of the more infuriating aspects of MS. It’s totally unpredictable. Certainly everyone’s experience differs, even if we get a symptom that’s more or less the same as someone else, it may last for more or less time, it may feel slightly different, or the pain aspects are different. Even when you get a recurrence of the same symptom it may differ from last time, plus your reaction to steroids may seem to be random; what helped last time may not make any difference next time! Your MRI lesions may help the Drs with information about lesions, but this might not necessarily have a lot of relevance to your experiential symptoms. So as Dr Geoff said, the only certainty is in relation to a piece of string. When you are relatively new to the wondrous world of MS it can drive you crazy - and it doesn’t make it very easy to explain to other people either…

Hope your current symptoms get better soon, don’t get despondent about the length of time, sometimes it can take months to get remission from relapses and improvement to symptoms. What helps is directed exercise, so at your appointment, you could ask for a referral to physiotherapy, if you haven’t had their input already.

Sue