And breath !

It only feels like yesterday that this started / I was told I had ms, but 4 months ago, I am on a DMD I am not really acepting it yet, I was getting their, acceptance that is, but … I seem to be having a relaps. I do not except that it is happening. I want to pretend it’s not real !

I have been a grown up & told ms nurse & I have booked an appointment to see GP next week but…scared& confused & don’t know how to see this as OK…helpppppp…

hi sarah

we accept it because the alternative is a life in limbo.

you will begin to see life as still being worth living.

it is obviously changed but still good.

i was diagnosed just before my 50th birthday and turned 59 yesterday so that’s 9 years and i’m still surviving although a post birthday hangover isn’t making me feel too good.

life can be scary and confusing with or without ms.

you will survive and still smile through hangovers!

this is a bad idea, me trying to give you a pep talk with alcohol still plentiful in my system.

just trying to say that keep on with the things you used to enjoy but be warned that recovery time is longer.

carole x

ps it’s not big, not funny and not clever drinking to this extent

Belated happy birthday. Such a shame a cure for hangovers has not been found. Glad you had a good night. Thank you for reply

I started to reply to you last night, but got a bit overcome with tiredness and gave up.

I think you are dealing with your diagnosis really well Sarah. Don’t expect that you can be diagnosed with something like MS and you can immediately get over it and be positive.

You are going to have wobbles and your first potential relapse after diagnosis is scary, because you now know what can happen. If you are having a relapse and you’re on a DMD, then maybe that drug isn’t doing what it should be. Then again, some DMDs do take a while to really start having an effect on you.

Meanwhile, get your GP surgery to do a urine specimen check, to make sure you’re not harbouring a UTI. Sometimes a urine infection can look like a relapse. You should be able to phone your GP, talk to the receptionist and arrange to take a sample in in the morning (it usually has to be the morning because the samples have to go to the lab if positive).

If however, it is a relapse, get your GP to sort you out with some high dose steroids, the sooner the better (after aforesaid UTI check that is).

And don’t expect to be all positive all the time. You’re allowed to be upset, scared, angry, whatever you feel is appropriate.


Thanks for your reply sue, I saw ms nurse last week & I don’t have a uti, I was sort of hoping I did as that would have

been a preferable cause than a relaps, having talked it through with the nurse, we agreed to continue on the Tecfidera for

now as I may not have been on it long enough for it to take affect (especially as I had a weeks s&d near the start of

treatment).(3months). We also agreed that I would hold off for now on taking steroids ( the week after taking them I

was really not good last time. ). So if I can avoid them I will. So it’s now time to wait and see what happens, last

time things progressed about every 3 days for a few weeks, fingers crossed nothing too dramatic happens.

I think Tecfidera is one of those DMDs that does take some time to really be doing it’s job. So you’re doing the right thing by sticking with it. Obviously if you had another relapse after 6 months or more on the drug, then it might be time to think again. Hopefully it’ll be a small relapse, over nice and quickly, doesn’t do much damage and you’ll be back on form very soon. Sue

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Hi Sarah, welcome to the club :slight_smile:

I think everyone here can relate to what you’re feeling. I think it can be normal to have your emotions all over the place. Everything’s new & uncertain & scary. Everything we thought was certain can suddenly seem less secure than we thought. It’s the uncertainty that I can find hardest. There’s few things more scary than the great unknown - it’s like being afraid of the dark, because you don’t know what’s in it. But we’re all in it with you. Use this forum as much as you need to. And talk to your nearest & dearest too. Ask them to support you & to still be your friend. (And apologise in advance, just in case they get on the receiving end of any topsy turvy emotions!). Finding ways to get out how you’re feeling could be healthy, whether that’s talking with friends/a counsellor, or journaling, or having a good kick & scream (I sometimes put a cushion over my mouth & scream as loud as I can).

Like I say, post here as much as you need, we’ll be with you.