diagnosed with clinical isolated syndrome

New diagnosis and before diagnosis
1

Hi everyone, this is my first post.

I was diagnosed with clinical isolated syndrome (CIS) about a month ago after a MRI showed 3 areas of demyelination. Still waiting for LP results, though the neurologist says a diagnosis of MS wont be given untill I experience a 2nd episode and that I have about a 30% chance of having no further episodes. Does that sound right to you? Even though I am a trained nurse and my mum had MS, I had never heard of CIS.

It’s been a bit of an emotional rollercoaster of a month but I think Im getting my head round it now, especially as most of my symptoms have resolved, though I’m still tired - went back to work this week and cant believe how tired I felt after being back for 1 day! Also i seem to be left with a constant cramp like pain in my calfs. Does anyone have any suggestions for relieving this, espcially in bed as its definitely disturbing sleep?

Thanks

2

Hi Youngmarion,

Love the name - it’s reminding me of Robin Hood.

Yes, your diagnosis sounds perfectly in order to me. A single MS-like episode, or clinically isolated syndrome (CIS) cannot be diagnosed as MS, for the simple reason it’s not multiple. By definition, MS would have to be two or more distinct episodes, or, in the case of the rarer, primary progressive form of MS, continuous ongoing activity for some time.

If you have just one episode, from which you recover, even if that recovery is not 100%, it’s just described as what it is - a clinically isolated syndrome. No ongoing pattern that would satisfy a description of “multiple”.

I’ve seen various statistics for how many people with a CIS diagnosis go on to have a second attack, and thus get an MS diagnosis, but I do know it’s certainly not all of them. It’s not known why some people have a single attack, but nothing else ever happens. Possibly, it could have been triggered by a virus or something.

It’s a nasty situation to be in, just wondering if that’s the end of it, but only time will tell. At least you have some chance nothing else will happen at all. I take it your consultant is aware of family history? Not that MS is inherited, as such, but the risk factors are now known to be at least partly genetic, which means there is slight clustering in families. About 1 in 5 of all people with MS have an affected relative, but 4 in 5 don’t.

Tight, crampy calves are a common MS symptom, and could result from CIS as well. If it’s at the milder end of the spectrum, a simple calf-stretching regime may help. If it’s quite bad, there are prescription muscle-relaxants available. If you’re a nurse, and your mum has MS, you may already have heard of the drug Baclofen, for example. That’s a commonly used one. There is no reason, in principle, you need a confirmed MS diagnosis to get it. A GP is allowed to prescribe, but sometimes, without an MS label, a little bit reluctant.

You could try your GP. They might: (a) show you some stretches you can do yourself, (b) refer you to a physiotherapist, or (c) let you try a low dose of something like Baclofen, to see if it helps.

I’m usually very hesitant to recommend Google as a doctor, but if you just wanted to look up simple calf stretches anyone can do, I’m sure you could find some diagrams or videos. I’d try to describe some myself, but I think it’s much easier to see a picture or demonstration, than try to follow written instructions! Most calf stretches are easy, and involve zero or minimal equipment.

Hope this helps a bit,

Tina

x

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thank you for your reply Tina. Im starting some calf stretching exercises so hopefully they will help and if not then I’ll go to my GP. So far he’s been really supportive.

I always thought the term ‘multiple’ in MS was describing the multiple areas of demyelination rather than multiple episodes. My MRI scan showed three different areas of demyelination - two spinal and one brain. Anyway I am happy not to have been given MS as a diagnosis and if I get more episodes I will deal with them then. Im a great believer in not worrying about things that may not happen!

I have always been aware that there is a familial element to MS, but I thought that as I had reached the grand old age of 54 I was unlikely to get it. Since all this happened I’ve encouraged my kids and my sisiter to start taking Vitamin D - I know there’s not conclusive evidence abut its role in MS but I reckon it wont do any harm either. I had a really bad e-coli UTI infection about a month before my neurological symptoms started and the neurologist said that that may have triggered everything off as I am genetically predisposed to MS because of my family history. Who knows?!

Anyway thank you again for your reply.

Marion

4

HI Youngmarion,

I was also diagnosed with CIN after a first episode last year. I’m not sure how isolated it was though because my symptoms have been lasting for months (from May last year) and while some have gone away, others are still present and seem to be getting more intense - like the numbness and tingling in my arms and legs. I do feel a general overall improvement though compared to last year.

Are you still getting symptoms even if not in a big flare? I don’t understand why they say that it only progresses when you get a big episode as to me it feels that some things are getting constantly worse bit by bit. What is the difference between that and the primary progressive form??

L.

5

Hi Lara1

I am sorry your symptoms are still present after so long. Might be a good idea to get a consutation with a neurologist again especially as you think some symptoms are getting worse. I am not sure how long an isolated incident is supposed to last. Probably everyone is different as everyone’s demylenation areas will be different. My symptoms only started in February and my GP got me seen really quickly and I had MRI quickly too. My symptoms have more or less settled down now, though sometimes the tingling in my feet returns for a wee while and the cramps in my legs are pretty constant. Am really tired still too which I hope will resolve soon. Really hope you feel better soon.

Marion

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Sclerosis means scarring and the disease is labelled ‘multiple’ because the damage usually occurs at a number of points.

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Points meaning places in brain or spine.

8

My first neuro wanted to wait, I think for an obvious episode, before he made a dx. Unfortunately, my current neuro says I have PPMS so I don’t have episodes or relapses.

My current neuro also told me that the multiple does indeed refer to having more than one patch of demylination. IIRC, he said the threshold for diagnosis is 9 demylination plaques in the brain or fewer in the brain if there are plaques on the spine.

CIS was my first neuro’s term for what I had - I took it to mean he couldn’t see enough plaques to meet his dx criteria. But then, he didn’t look at my spine. My current neuro did and had me have a lumbar puncture and an evoked potential test so he found the evidence he was looking for.

On the cramp, my physio tells me that dehydration can make it muscle spasms and cramps more likely. The problem I have with drinking more before I go to bed is that I then wake up in the small hours needing the loo!

9

If symptoms last more then 12 months what do you call that just asking first neuro appointment next week. Thanks :slight_smile:

10

Thank you for all your comments here. Somene also sent me a private message suggesting either Quinine tablets or tonic water ( which contains quinine) for the cramps. As far as diagnosis of MS or CIS is concerned it seems that there appears to be a bit of confusion! Other threads I’ve read have also made me aware that diagnosis is not an easy process in many cases. An acurate diagnosis seems so important too as treatment cant really begin untill an acurate diagnosis of MS is made. I am grateful to my GP for getting me seen so quickly by a neurologist - he came over as quite reassuring - maybe that’s because there were only 3 areas of demyelination evident on the MRI. I dont know if 9 areas before a MS diagnosis is one neurologist’s criteria or if its a universal criteria - will need to do some research on that one. It certainly is a strange disease and manifests differently for different people.

Best wishes to all

Marion x

11

I found the main part of the MS Society website very helpful when my GP first told me he suspected MS and I wanted to know why he might think that and what the process was for getting a diagnosis.

Alysea, if you have had symptoms lasting a year I’d guess that whatever you’ve got is not the relapsing-remitting MS but other than that I couldn’t say. I’ve got primary progressive MS so when I develop a new symptom, it tends to become permanent. When I had my first neuro appointment, I took with me some notes on my symptoms: what they were and when each began, as best I could remember. It helped to have the information written down in front of me when he started asking questions.

Marion, I don’t know if the 9 lesions bit was just my neuro or if it’s in some guidance for all neuros to work to. He didn’t say.

Best wishes both of you in your search for answers.

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My main concern was my mobility if I have progressive ms will it get better balance or walking or I may need to get a occupational therapist for adaptions in my home had on going symptoms for over a year they got worse now seeing my neurologist on Wednesday thanks for replys helps a lot :slight_smile: