I am having a really bad week, think i’m having a relapse but don’t know for sure.Or is it just transient symptoms of MS?
Was dx in December after lots of sensory symptoms for years and a hospital admission for vertigo, lack of co-ordination on L side, tinnitus, severe headaches, nausea and numb face L side and numb from neck down. Could not walk at all. MRI’s showed 2 lesions and was given a definite dx. Due to start treatment next month.
Thing is last relapse was so severe i’m not sure i can define what i’m feeling this week as a relapse?
Ive been getting shooting/bone/burning pains all over my body - affecting my sleep.Tremor in my head on lying down and in L arm. Fatigue is at an all time high and my vision is blurry round the edges. I had a cold 3 weeks ago which has long passed - is it the after effects or a ‘proper’ relapse, i just don’t know!
Should i contact my MS nurse or wait to see if it improves? Don’t want to waste her time being a hypercondriact but definitely not feeling as good as i did 4 weeks ago. Any advice welcomed!
Definitely call your MS nurse in the morning, but also see your GP to get a referral to ophthalmology to get your eyes checked. Maybe ask for neuropathic painkillers too (amitriptyline might help you sleep better too - it makes a lot of people very drowsy).
Thanks for replying so quickly. I had a feeling that might be the answer, just still unsure about so many things I will contact my MS nurse tomorrow, just feel like im making a fuss over nothing (compared to the relapse previous).
I am already taking Pregagablin which has helped in the past, but in the last week the pains have come back with avengence.
How does it work then do i keep taking the meds even if there not working at the moment and hope they become effective again after relapse has moved into remission or will i have to switch dosage/meds?
If I were you, I’d up my dose for now. At some point, when you realise that you are in remission, reduce the dose back to a level that is enough, but not too much. For me, that’s when I still feel the sensory symptoms, but they are very mild. If I can’t feel them, I may be taking too much pregabalin and I don’t want to become tolerant and run out of options too soon. I’m lucky though, I am very sensitive to pregabalin and only need a little for a big effect. If you’re already on max dose (600mg a day), you will probably have to add another med. Your MS nurse will advise though. Kx
Thanks again. Spoke to nurse this morning. She thinks relapse too. So now i have to wait untill after Easter to see GP. Although not keen on taking steroids. This is 3rd relapse in 12 months so should probably save them for when mobility is an issue? Taking 300mg a day of pregablin so will up the dose (nurse advised this also). Thanks for your help Karen x
I’m not a fan of steroids (understatement), although I try and be balanced when I speak to others about them so, bearing that in mind…
My recommendation would always be to do without, if you can. But if someone is struggling, they shouldn’t try and go without simply because another person or people thinks they should. We have to do what’s right for us, no one else.
I hope the extra pregabalin helps and that things settle down very soon.
Yes steroids are far more damaging than I realized. Hospital gave me no info first time I took them, researched a bit myself and found out about the PML risk. Think I will decline them and see how things go. Again thanks for taking time to help. This forum is lucky to have you. Xx
Just to give you the otherside of steroids. I found iv to be the best, stopped my relapse within 45 mins of starting them. That happend twice in a row. I must admit i didn’t like to take them but they worked a treat for me every time.
Thats great Darren, sounds like you have a good response to the steroids. I have never had the IV steroids only oral prednisolone (excuse the spelling!) i didn’t notice any improvment still took 6 weeks to get back on my feet. Don’t know if it would have been longer without them. That’s the problem i guess not knowing how much they help. Are IV steroids more effective than oral ones then? Thanks for your advice, it’s great to have different opinons! x
I only took oral steroids once and they did nothing for me. Had IV steroids 3 times and twice they had an immediate effect, once they improved things a lot but not completely.
According to research, IV steroids and oral steroids have the same effect. Which makes sense as it’s the same drug after all. It’s difficult to do a direct comparison in one person because they may have unwittingly had IV/oral for less/more severe attacks and have done that sooner/later (steroids work best early in a relapse). In other words - there are a lot of factors involved.
I’ve had IV steroids once, four years ago, and oral steroids once, very recently. In both cases they worked for me very well and improved my walking within a matter of days. The sensory symptoms do tend to persist longer but since they don’t really stop me doing anything I can cope with them. This relapse wasn’t so severe but I think that is down to the fact that I’m on Rebif now so I’m hoping to recover much quicker overall. Time will tell …
The first iv i had wad about a month into relapse and the second was about a wekk. Both stopped the relapse very quickly. It does seem to be very personal, how and if the steroids work.
Just to clarify, there isn’t anything wrong with the research that I know of. All I meant was that different people may have different experiences because no two people and no two relapses are exactly the same.
Large scale studies (which account for those individual differences) show that oral and IV steroids are just as effective as each other.
hi anonymous i have very similar symptoms to yours i have a brain scan and they found no lessions so they are saying i probally dont have ms so i was just wondering where your lessions were found.iam feeling very unwell at the minute and just hoping they find some answers soon.i hope your are feeling a little better xxx sorry about any spelling or grammer iam struggling to see the screen lol
