Forum

CIS Diagnosis - what now?

Hi All,

been on a bit of a whirlwind since March this year!

Symptoms started with tingling feet, then pain in backs of legs (only when sitting). Had to push for MRI (sister and dad had MS so alarm bells ringing) and eventually paid for a private one which originally I was told I had 2 lesions on back and 1 on brain. The MRI is then reviewed by a neurologist and told me the imaging department got this wrong, and there is actually only 1 area of inflammation on my back, and no lesions on the brain. This mistake was frustrating as had bit of a breakdown when my GP told me I had lesions in various areas, so to be told it was worse than it was did not help my mental state!

I tried a short bout of steroids (tablets) to try and bring the inflammation down but these made me very ill and I cut the course short by a couple of days as how bad I was feeling. The symptoms stayed the same.

The last couple of months the tingling had turned to burning in my feet and only when wearing shoes, I also had a small bump feel at the bottom of my foot and a feeling of bunched up socks, which I found out were big symptoms of Mortons Neuroma (foot problem) so recently had an ultra sound to check this and they couldn’t find anything wrong :frowning: (was hoping they would find something). I have also been seeing a osteopath the last couple of months and this hasent really helped my pain in legs when sitting. i

My neurologist has now put me on Pregabalin which I have now been on for 2-3 weeks and has slightly eased the burning in my feet and pain in my legs but not enough for me to be symptom free again.

I feel like I didn’t give steroids a good enough go to really bring down the inflammation area on my back and by trying this again could help. Does anyone know if they can give different types/doses of steroids? is there any more benefit of having it has infusion rather than tablets?

Alot of what I read about CIS is that its a one off episode, symptoms die down and its then a case you need to wait and see if anything else happens. I understand if you just have one area and none on the brain its only a 20% chance of developing to MS? that gives me some hope. The problem I have is that the symptoms have not died down enough for me to get back to living my “normal” life, hence why I am wanting advice on wether to try steroids again.

My neurologist has also offered to refer me to see a MS specialist in Cambridge to get their view so I can get another opinion which I think I am going to do.

I appreciate your thoughts on this, this group is great and everyone is so supportive!

Thanks all

The Funk DJ

Hello

CIS can be a precursor to MS. And it does tend to be a bit of a ‘wait and see’ diagnosis. What a bugger that you were told there were more lesions than there actually were. That is the reason why we should only listen to neurologists and not GPs when it comes to MS/MRIs etc.

Re steroids, have a look at https://www.mstrust.org.uk/a-z/steroids-methylprednisolone

The thing about steroids is that a) they are horrible drugs that make you feel like cr@p while you take them, b) they are the best option we have to bring a relapse / CIS to an early end, but generally when taken right at the point you are experiencing the inflammatory event that’s caused the symptoms. But c) they are unreliable buggers. What I mean by this is that they sometimes work brilliantly and quickly, other times they work a bit, occasionally though, they just don’t work.

Steroids are difficult to take though. They make you feel a bit ‘speedy’, sometimes with palpitations, often with edginess and almost always with sleeplessness. Then after you’ve taken them they make you feel horrible - like you’ve been kicked all over.

There isn’t a choice of doses with steroids for MS relapses, it’s 500mcg per day for 5 days orally, or 1000mg per day for 3 days by IV. Intravenous steroids would work best (in my opinion), but basically it’s what you can get immediately the relapse begins that works best. So IV are often pretty impossible to get hold of right when you need them, while oral are easier to get. I’ve had amazing results from both. And some fairly rubbish results from oral steroids when taken later.

With regard to your ‘it is, no it isnt’ MS experience, what I’d take from that is that you’ve had a scare. Hopefully you’ll get complete recovery from the effects. You could find it may take time, but you’ll get there. Then try your best to forget about it until and unless it comes back. It may not.

Best of luck.

Sue

Sue,

Thank you so much for your response. I have to say after reading various posts on here you a true hero of this forum, you offer so much detailed knowledge and support to people and I hope you know how appreciated you, I am sure you help so many people.

Thank you for the informed response re steroids, as my symptoms started in March it seems like taking them in August may not have had as good as effect if I had taken them in March, but I guess the problem was I was only under investigation then and didnt know I had an area of inflammation!.

Re recovery its been 7 months now, and id say things have improved but slowly. Is this normal for it to really take time? I am not feeling too great at the moment, but that could well be the pregablin I am on, so need to judge how I feel once I have finished these.

I am also trying to take heart that at the moment its only a area of inflammation on my back and none on brain, am I right in saying this has a substantial lower chance of developing to MS? I think read somewhere only 20% go on to develop MS. I am just trying to cling on to any hope I can that things wont develop further!

I guess it will be a case for me of going to the MS specialist and see what they think re further treatment.

How are you feeling at the moment Sue? hope things are going ok for you

1 Like

That is a lovely message, thank you Mr Funkster.

Recovery from relapses can take so flipping long you forget to notice the symptoms are improving. Partly we compensate for the iffy nerve damage so get past the irritation of the relapse, and partly the improvement is just so slow that you’ll suddenly think to yourself ‘oh, my foot/leg/eye/face/whatever feels better, I wonder when that happened?’

One way to keep track is by starting a diary. Think back to when your symptoms first began and put a rough date on that and what it felt like, then note what it feels like now. You can revisit the diary every now and then to see if you actually feel any better. I’ve been keeping a diary for 8 years now (there’s a bunch of different apps - I use one called Day One) and it’s invaluable. If the worst happens and you do need to see a neurologist again, the information will be very handy. In the meantime, once you’ve written it down, you can forget it about it!

In terms of translation from CIS to MS, I’m not certain I believe in the statistic. Many people live for years in ‘limbo’, wondering if they are developing MS and trying to get doctors and neurologists to understand what they are experiencing. Others manage to get on with their lives and just manage to put the spectre out of their heads. If you can, try for that one. In very different times (pre disease modifying drugs), I lived with relapses for 5 years after my initial tests without even knowing that’s what I’d been tested for. It never crossed my mind that my symptoms were neurological, let alone MS.

These days I can’t forget. It’s now been almost 23 years since my first relapse and tests. I’m still in the relapsing group, but progressive relapsing rather than RR. My walking is next to useless and I have a whole load of other sadly permanent issues. But my mood is OK, I am fortunate enough to have a pretty fabulous husband and we have a decent life. (So long as we have nice food and wine plus occasional visits from friends we are happy!)

Sue

1 Like