Hi so my cis episode started 4 weeks ago. I had 3 days of iv steroids, 7 days in hospital. positive Mri neck spine and brain. Positive l.p…I was hoping for some improvement by now, I’m a fit person normally with 4 kids and a job and this is worrying me now or am I being impatient? So initially my legs were numb, the numbness has gone but now have pins and needles last week I started feeling stronger and better in myself but yesterday I noticed a few episodes of a vibration shooting through my thigh…yesterday evening for around 3 hours I had a shooting vibration through my back every time I bend my neck forward and then a buzzing on and off when I went to bed, thus morning it’s constant humming in my lower back/pelvis with the shooting vibration when I bend my neck. Is this part of the relapse episode? I really need to plan on getting back to work but i have a very physical job involving driving too and I’m worried how long this might go on. Neuro team also suggested my chance of ms diagnosis was very high and I’m having repeat mri in 2 to 3 months. Any advice grateful. Am I doing and expecting too much? I hate sitting around! Thanks
Well, your new symptoms might be another episode/relapse entirely as the symptoms are different. Or it could be part of the initial relapse which led to your CIS diagnosis.
Did your initial symptoms completely disappear after the steroids? Even if it took a few days/weeks?
If so, and these new feelings are totally different, it could be another relapse. Sorry to be the bearer of (possible) bad news and all that…
The feeling you have when you bend your neck forwards sounds like Lhermitte’s sign - see https://www.mstrust.org.uk/a-z/lhermittes-sign
And the reason I’m suggesting it could be a new relapse is this: https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses
If you have been given the contact details of an MS nurse, try calling him/her. Otherwise, you could get in touch with the neurologist (try phoning the hospital and asking for his/her secretary).
The trouble is that you probably can’t take another course of steroids so close to the previous IV course. But if your relapses are coming this quickly, you could see the neurologist again urgently and/or maybe move the MRI date up. Possibly start disease modifying drugs (DMDs) to prevent any more relapses?
Best of luck. I do hope you get some help and support. It’s a frightening new world for you, and all you want is to feel better. Believe me, it is possible to get past these early symptoms and start feeling ‘normal’ again. I did for years after my initial symptoms. So don’t panic and start thinking you’ll be plagued by one relapse after another on and on. Chances are you won’t.
Thank you Sue. No my legs have never returned to normal, initially numb and as that wore off they became pins and needles instead, this has shown no improvement or lessened etc. The consultant said he would post me info for ms nurse but I haven’t received it as yet. I completed the steroids just over 2 weeks ago. I will try contacting the Neuro admins at the hospital to get the details of nurse and go from there. We have a holiday booked abroad in October and the consultant strongly advised me to get insurance to specifically cover this need as he felt I may relapse rather soon. Can doing too much aggravate things?
Doing too much can give you fatigue, but it shouldn’t spark off wholly new symptoms.
Perhaps the best thing to do would be to phone the neuro admin team, ask them for the contact details for your MS nurse and speak to the nurse about your situation.
You should always get insurance when travelling, but CIS/MS isn’t too likely to cause a massive problem when travelling. It’s perhaps marginally more likely that you’d have to cancel, but my travel insurance hasn’t been a big issue. Nor has travelling, even with long standing MS and quite significant disability (I’ve been to India twice in the last few years).
In terms of your existing symptoms not yet having remitted, that’s not really unusual. It can take months for symptoms to go. The steroids sometimes work brilliantly and really quickly, other times they’re slow to help (or not help at all - unreliable beasts steroids!). Our bodies often compensate gradually as we get used to our own ‘new normal’. Then one day you’ll realise ‘the pins and needles are feeling better, and I didn’t notice!’
Don’t worry too much about your October holiday, you’ll feel miles better way before then. It’s only been 4 weeks so far - I know that to you that seems like forever, but from my perspective (22 years with MS), it’s not too long.
So I spoke with the MS nurse as suggested, she was lovely, she felt it likely that new symptoms are the current relapse as time in between wasn’t quite 30 days. She checked that my follow up mri has been requested and it has. She also said she will document this episode so that the consultant can be aware of it. She told me to contact her if any symptoms during this episode affects my functionality. So it’s just watch and wait. So I’m trying to ignore it but it’s still very intense vibrations. Thanks for all of your advice Sue.