Hello
I have been diagnosed with CIS and as my latest MRI did not show any new lesions in addition to the ones that were seen previously I am not considered to have MS. But I get a number of the symptoms, especially fatigue, tremor, tingling, memory problems and some problems with walking and manual dexterity. The only treatment I’ve had is 5 days of i/v steroids after the main ‘attack’ in 2011, and now 2 days of i/v steroids this week because I was feeling wiped out. The steroids have given me awful insomnia, and periods of a racing heart, which have been scary, and I’m totally exhausted, possibly more so than before the steroids. Is this normal? I don’t remember feeling so bad in 2011, but at that point I suppose I was still reeling from the first episode of inflammation. How long do others take to get back to normal, or something like normal, with steroids? I should go back to work, but I’m not sure I have the energy. The trouble is no-one has heard of CIS - they understand MS is debilitating, but CIS means nothing to them, and it is hard to describe, as are the effects of the steroids, which are supposed to help not make things worse…
Dx,
High dose steroids are shockers for interfering with sleep. It can be helpful to have an over-the-counter sleep aid like Sominex on hand, or even to get a few nights’ worth of proper sleeping tablets out of your GP, just to tide you through the worst of it - a couple of days and nights and your sleep should be back to normal, with luck. This and the other things you mentioned are certainly ones that many of us who have had steroids for relapses will be familiar with. If you can take it easy for a few days, do. It is very tempting to plunge back into the fray as soon as you feel able, but it makes sense to meet the steroids half way by giving your body a chance ot heal. But that’s not always possible, as I well know!
Alison
Te effect of the steroids is petty much what you would expect. When I have had them I go from an extreme high with so much energy then down to a real low with difficulties sleeping. Sometimes they work in helping the remission and frustratingly sometimes they dont!
JC
Hi,
A slight aside from your question, but I’m a little surprised that something like three years after your initial attack, you’ve been prescribed another dose of I/V steroids, yet this is still not being treated as a second episode. Are there any plans to review your diagnosis, and see whether it’s still one of CIS?
If you feel work do/would understand multiple sclerosis, but not CIS, perhaps it’s worth explaining that the difference is only one of numbers: a single attack cannot be called multiple sclerosis, but it’s the same underlying pathology.
Unless, of course, it is your choice not to raise the spectre of MS, in case it never happens, and you feel you might be suspected of crying wolf.
Tina
Thank you Alison100, JC and Anitra. I’ve not heard of Sominex, so will look out for that. am feeling a bit better after having had some limited sleep the last couple of nights. Am just trying to go with the flow.
The neuro seems wedded to the idea that no new lesions means it’s CIS not MS. I don’t want to cry wolf and say I have MS, even though I regard CIS and MS as basically the same condition, and not sure I want to have treatment with MS drugs as they sound so strong, but I would like more recognition from the medics of what CIS entails. but I see the neuro again in June and willhave more Qs for him.
D