I’ve generally considered myself quite lucky with my MS.
Here’s a bit of history -
First episode of Nystagmus in 2001 aged 18.
DX in 2005 (ish) with bout of Nystagmus/L’hermittes sign aged 23 (whilst pregnant with my first child).
Four children later, now aged 32, 3-4 bouts of Nystagmus, L’hermittes sign, mild fatigue (which I mainly put down to being a mum of 4 and being a full time student or working full time).
So here I am on my last day of a 5 day course of oral steroids after developing symptoms that I’ve never had before the week before last, namely numbness/weakness/pins & needles below the waist (left foot, lower right leg & foot, upper right leg and ‘saddle’ area).
I don’t even really know what I want to ask, as I know there are very few answers, but what do I do now? It hasn’t gone away or even seemed to have improved with the steroids. I am finding it very difficult to be able to speak with a medical professional about what to do/expect/hope for - I suppose some words of experience or support would be a start.
I soooo do not have time for this, I have so much to do and need to get on with things but I feel I may need some practical help.
When will this go away???
Sorry for terrible writing and probably making absolutely no sense, I just don’t know where to turn
You need to keep in your mind that steroids aren’t a quick fix for a relapse. They sometimes (ie. almost never) bring about a speedy end to the symptoms of a relapse. But more often they take weeks. They are not a cure, what’s needed is time for a relapse to remit. Steroids may speed up the remission but you’ve got to be prepared for it to take weeks or even months to get back to (hopefully) where you were.
Your biggest problem it seems to me (apart from the obvious symptoms of this relapse) is that you have an incredibly busy life. If you have 4 children plus college/work then it maybe seems that you just don’t have the time for a full on relapse. Do you have help or support? What happens when you have numbness, weakness, pins & needles etc is that your existing fatigue will get worse because it becomes that much harder to do everything you normally do.
Essentially, you need to somehow get the fatigue under control, either with some medication (if you can get a prescription for Modafinil it would help, but it’s difficult to get prescribed these days, so try for Amantadine) or simply some extra rest. Are there any jobs you can put off to another day, any ways to make your life easier? Eating ready meals rather than full on cooking? Getting your older children involved in whatever they are old enough to do that helps you, even if its just sitting quietly reading a book, entertaining the younger ones or playing a game to allow you time to rest a little.
Life is so hard with MS, just normally, without the added stress of a relapse. And you have it harder than most, with your family life.
Try to allow yourself some time to get better if you can. If you have an MS nurse, try to get some advice from him/her, otherwise, see if you can get an appointment with your neurologist. Maybe they can help.
I do, thankfully have a lot of support (husband, mum, in-laws are falling over themselves to help, bless them) so in terms of housework, picking up/dropping kids off at school & clubs etc, we’re pretty good. Frozen lasagnes, etc. have come into their own to, haha!
I have actually just recently been for my yearly check up with the neuro who wants me to start back on my rebif after having our youngest child. Just to add another layer of complication - he’s eight months and still breastfed (which I am very passionate about). I took advice from a specialist pharmacist who did a lot of research for me and cleared me to continue breastfeeding whilst I’m on my steroids (subject to certain conditions). She has also looked into and assured me that rebif is safe whilst breastfeeding. So I would have to look into any further medication in a similar way.
I’ve found it really difficult to access any practical support in terms of rehabilitation etc. My lower right leg feels very weak and I’m having some difficulty getting around. I called to try and speak to my ms nurse and ended up having to fully explain myself and accept advice from a secretary who informed me (quite rudely) that ‘they won’t give you anything as you should see some effect from the steroids anyway’. GP also was not very useful - said he could maybe speak to red cross in the next few weeks or something. Therefore I’ve bought myself a stick from Amazon!!
I feel very ‘out on my own’ with this and I’m not really sure where to turn.
Uni have thankfully been very understanding but I am hoping to try and get in towards the end of next week (I had awful steroid withdrawal after my last lot, so I’m expecting that over the next few days).
How well do you usually recover from your relapses Sue?
Maybe what you need is some physiotherapy? And/or occupational therapy? Can your GP refer you if your MS nurse isn’t very helpful? In my area there is a multi-disciplinary neurology team which includes physio, OT, bowel & bladder plus MS nurse. Sometimes OT can be quite useful in terms of equipment to make things easier. Obviously an NHS stick isn’t very pretty so I’m not surprised you’ve bought your own!! But physio would maybe be a good thing.
In terms of my own remission, I wouldn’t be a very good yardstick to measure against. I’ve had RRMS for nearly 19 years and haven’t properly recovered from my last major relapse 4 years ago. So I’m quite disabled comparatively. I’ve also had big problems with DMDs as I’ve had serious side effects from 3 out of 4 that I’ve tried. I’m currently not on a DMD due to low lymphocytes from Tecfidera.
I’ve always found remission to be quite slow. The fastest remission has always been following IV steroids rather than oral. But there have been times when there’s been remission as much as a year after a relapse. Which I’m sure is both a good thing (that where you are after a month or two isn’t the end of it) and a bad thing (like, that’s a really long time!).
Has your Neuro not suggested that you could try a different DMD after you finish breastfeeding? You would qualify for Tecfidera or Gilenya which have a better expected reduction of relapse rate plus having the benefit of being a daily pill rather than a needle.
At least you have plenty of support. But you still need to ensure you get sufficient rest. And with 4 children that’s not the easiest thing in the world I’m sure. Not that I’d know - I’ve never had any!!
Yes I think maybe some further research (on my part) into the new DMD’s is required. I’ve always done pretty well on Rebif and, whilst I’ve been offered one of the new oral drugs, I’m concerned regarding side effects etc. I’m of the ‘better the devil you know’ opinion at the moment!
Thanks so much for your advice Sue - I’ll see what I can do (who I can speak to tomorrow)!!
