You know when you wake up with a brand spanking-new MS symptom?
That heart-stopping moment when all your worst fears come crashing in on you?
Yup. This happened last week. A normal morning – coffee, cat, catch-up with paperwork, countdown to waking The Teenager.
Except that morning was different. My foot refused to play fair. It gave up the ghost, schlepping behind me like a stroppy Teenager (and boy, do I have experience of that).
Panic rose and I quelled it. The next day, same thing. And the next. A new symptom. Probably every person with MS’s worst nightmare.
I decided to beat it at it’s own game, determinedly lifting the naughty foot with every step. Only problem was, I looked ever so slightly odd. Exaggerated. Like I was walking in slow motion to the ‘Chariots of Fire’ theme tune.
I ran it past the MS nurse (the problem, not my foot) but declined an appointment. ‘I’ll be fine!’. I ran it past the chiropractor who urged me to call the MS team. ‘I’ll be fine!’ I put it out my mind. But it stayed and I dragged my foot round the house. Finally, I took the offered appointment.
What’s worse? Being told it may be a relapse or it may not be a relapse? It doesn’t really matter either way, I won’t take any more steroids. I can’t bear the thought of waking up at 2am and having a strong compulsion to dust all the lightbulbs and clean the skirting boards, such is the bizarre energy those tiny tablets give me. Plus they destroy taste buds. And I pack on the weight no matter how many edamame beans I eat.
So I am in a kind of weird limbo. I worry that the endless relapses have found a sneaky way through the Campath treatment I had. I worry about my mobility – the defining point of being accepted as ‘relatively normal’ within societal boundaries.
Above all, my dodgy, annoying, schlepping foot has dominated the last week. I am panicking. Ever so slightly.
🙁 really sorry to read of this 🙁 its a horrible feeling when a new MS symptom shows up, and tends to make a person think the worst is happening. I felt that way with the last relapse, panicked I would never walk properly with my right leg again, I did go on steriods, and didnt sleep but they worked. Chocolate didn’t taste right for almost week :/
does IV steriods cause the same probles as the tablets, some people tolerate IV steriods better than the tablets.
I think they do – I always have a horrible taste in my mouth and wake up in the early hours of the morning.
I’m hoping it’s just the foot drop presenting in a completely new way. We always worry so much, don’t we??
A drop in my left foot was one of my first symptoms before diagnosis. It occasionaly comes back although it doesnt always do so during a relapse for some reason. However it does always go away (so far, touch wood!) so whilst it is a nuisance and makes mobility more problematic it isnt a permanent fixture. I hope the same proves true for you!
Oh I hope so!! Can’t wait for it to go, starting to do my head in now.
Think about using a Musmate, not pretty but quite practical or an orthosis bit of a performance to put on in the morning or maybe just stay as you are
I’m battling on! Just got to remember to keep picking my feet up…
Chill, chill! You might just be run down or have a bug hanging around. Is your Campath meant to stop relapses or is it possible you still get the occasional one. I remember when I had a relapse a few months after my daughter was born, more than 12 years ago, and my jaw went numb and it felt like I was talking funny. Since that relapse I have never again had that symptom or any other facial sensory problem (thank goodness). Your foot might get better soon and you won’t have that problem again.
It’s interesting when I read all the posts on MS forums/blogs in the UK and the medical approach there seems so different to here in Belgium. I don’t know anyone who gets steroid tablets here, we are whipped in for 4-5 days as outpatient for IV Solumedrol (hooked up for hour or 2 and sent on our way). Impression being that the response is more immediate. Also we are encouraged to get suspected relapse checked out within couple of days. Usually told if the relapse has been going for much more than a week then it could be too late for steroids to be fully effective. Know people back home who get fobbed off for weeks before grudgingly being given steroids and by then it’s almost pointless.
Relax, have a gin ,your foot WILL be back to normal soon. If that fails check out Sochi Problems on Twitter. Hilarious
Funny you should say that about the Campath – I’ve read up a bit more and there is still a chance of relapse, but much diminished. The neurologist wasn’t sure if it was a brand new symptom or a different variation of an existing one. But to me, I’ve never had it before, so it’s new and has definitely taken some getting used to!
Your system sounds pretty good. Have to say though, they are pretty speedy here in Cardiff. It was me who didn’t want to book in, not the other way round!
Sending hugs and best wishes xx
I am doing a very good impression of a waddling robot with heavy arms.
You are so right, it is frightening and you just do not know how long this new thing will hang around for and what that may mean.
I hope it goes as quickly as it came.
Definitely. I think it’s the not knowing that’s worst. I was doing not too bad – for over a year now – so although it’s only a small symptom, it feels more significant. And the fact I’ve never had it before. But definitely feel very churlish even writing about it as Campath is such a great drug.
Hoping you remit, but if not, then there are many things to fix a foot drop which is common with several issues, not just MS. It’s going to be okay.
Sunday morning now and it’s still with me, lol.
The MS team have been great as always. So hard to know what to do sometimes! I’m not as worried as before. Will see how it goes next week and work out where to go from there!
Obviously, very late to the “party” — hoping it’s resolved itself by now? Will read more recent posts with my fingers crossed.
It’s much better now! Either that or I’m used to it.
I was in town today and it was pretty bad, but at least I got some new jeans!