Hello
I have RRMS diagnosed Dec 2011. I am generally well and just have the odd moan now and then
but never actually had to take time off or start DMDs.
I think I have about 3-4 mini relapses a year but might not be real relapses as generally they don’t have
a new symptom just numb legs, dizziness, tinnitus, etc that I normally have so they might be related
to other illness and it gives me a pseudo relapse.
My last relapse was real I think as I had a new symptom which was October and I was offered steroids but
my MS nurse said as the symptoms weren’t stopping me driving / working she would probably hang on until
the symptoms were bad. Now I feel like I am starting another ? relapse. Feeling dizzy and getting lots of burning
leg pain which is how I feel my relapses start. Is it worth telling anyone? What is your experience of using steroids?
I am interested to know how bad your symptoms got before DMDs? In my head I imagine you need to be quite
bad to start the DMD’s but really I have no idea.
Hope that makes sense x
Thank You x
Speak to ms nurse about your relapse see what they think.
I have had 3 or 4 relapses and Iam on avonex now. I was given the go ahead after the second attack. I recovered fully from the first attack quickly, and the second i didn’t really notice. But was enough to be diagnosed and given dmd’s.
Darren
Thanks Darren - hmm yeah I might call her. I still am at the stage where I am wondering if I am just being a hypochondriac!
Do you mind me asking what your symptoms were that caused you to start Avonex?
I wasn’t the symptoms just the fact i had 2 clear relapses in a year. My first relapse i couldn’t feel my legs but was still mobile, the second was a little grey/ purple patch in my vision.
The neuro wanted to start after the first attack, but i was hoping it was a one off. My lumbar puncture came back possitive for ms and the mri did show damage.
On the steroids… the first course i had was iv, made me feel brilliant. Slightly high but in hospital thats allways a good thing. Then i tried the pill form, it was ok but i had a terrible stomach and couldnot sleep. Both forms of steroids made the relapses go quickly.
Thanks Darren - my problem is that my relapses have happened after illness or surgery and so they cannot be counted as a true relapse. I will have a chat with my MS nurse and have a moan at her - Thanks for the reply x
I have always been similar to you until this last relapse where I feel my leg is taking a lot longer to recover. I have had steroids three times in just over two years now whereas before did not have any relapses or many symptoms for six years. I would like to avoid medication if possible however if DMDs would make a difference to the pathway etc then maybe I need to be looking at these so I am also interested in knowing when may be good to look at these options. I also wonder whilst I am not on it am I allowing it to get worse when the DMDs may halt or slow it down? Not great with needles though so this scares me too! Bet I haven’t helped you much. My tell tale sign of a relapse is my left leg…I struggle to use it and it feels very heavy…this time however I thought it was just weaker and left it until last week when it got increasingly worse to contact the nurses/GP who gave steroids and said its a relapse. As a result of leaving it a while (I think) I am not recovering as fast as I have done in the past. Feel fine in myself but the leg is still not as it was. You do need to ring the m.s nurse for her opinion. I notice your a mum of two so this probably leaves you tired and may affect it. I have just the one and he tires me out. Xxx
Thankyou LisaLou. I know I want to avoid meds too however my MS nurse was telling us that people who starts DMDs when they meet the criteria tend to have a better outlook for their symptoms. So tricky as I don’t feel bad enough to start DMD’s but I don’t want to ignore the increasing frequency of my symptoms.
I am a nurse and Mum to a 3 and 4 year old so life is pretty crazy most of the time and I don’t think I help myself.
I keep thinking they are going to tell me its all in my head - I have spent a long time being told that and its hard to shake off.
PS - re - the shoes in your other post. Heels are a no go for me now and so are flip flops but I have lovely sparkly inpanema flipflops which have been worn to many a wedding as they have straps if your feet are misbehaving that day.
Moan away at them till you get some answers.
I have noticed i get very stressed before a relapse, not sure if stress is a first sign or a symptom of the relapse.
Goodluck
Darren
Very interesting as I find myself screaming at the kids and hard to tell if fatigue has made me stressed or the stress makes me poorly. Oh well am sure it will all come out in the wash. I just fell over as I got up to make a cuppa so its probably a real one!
Thanks for the advice on the shoes Hun. Wow you are busy… Make me feel lazy 
haha. That’s an interesting point re the meds and I think at my next app I may be asking more questions about the DMDs. Although the needle phobia is huge you know! Can’t even take my lil boy for his jabs without passing out! Shoe shopping for me now x Oh and hats off to coping with a three and a four year old! My lil boy tires me out as it is x