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Is clinical isolated syndrome of MS a diagnosis?

Good morning, this is my first post on the forum, although I have visited a couple of times in recent months.

a few weeks ago I had my second hospital appointment where I was informed to tell the DVLA that I have clinical isolated syndrome of MS. Throughout the appointment my husband and I were given the strong impression that MS was now diagnosed (I had a brain Mri in June which showed multiple lesions and demylation).

Is this classed as a diagnosis of MS or not?

I have just received a report from the consultant indicating that it is possible MS and possible clinical isolated syndrome! This word, possible, however was never mentioned face to face. Having already notified insurers I am now left feeling very confused… I’ve called the hospital but not heard back as yet.

thanks for any help or advice.

Hi Zoe,

No, Clinically Isolated Syndrome (CIS) is a separate diagnosis from MS.

Usually, it’s just called: “Clinically Isolated Syndrome”, without the “of MS” bit. It seems to be the addition of that that has caused the confusion.

Clinically isolated syndrome is a single attack of something that resembles MS, but it cannot be MS, because it’s not multiple. That’s what “isolated” means. It can’t be isolated AND multiple - it has to be one or the other.

As things stand, you’ve not been diagnosed with MS, and there seems some doubt even about CIS.

Not everyone with a CIS diagnosis goes on to be diagnosed with MS. If you had a further attack, it is likely you would be - but not everyone ever does.

Tina

Hi Zoe, i was diagnosed with “clinically isolated syndrome” a couple of months ago and its a sit and wait for anything else to happen, i am curious about you being asked to inform the dvla as this was not mentioned to me at my appt x

Hi

I was diagnosed this year with relapsing-remitting MS. I had a relapse in 2012 where my face and left arm went numb (but I didn’t bother seeing my GP at the time as the numbness was initially in my face so I thought it was dental work playing up, e.g. my root canal tooth!)

This year I had the numbness again and a whole load of other sensory/pain symptoms on the whole of my left side. Like you I had an MRI which showed multiple brain lesions (some old, some newer) which at the time the neurologist and radiologist felt was highly suggestive of demyelination. At my second appointment with the neurologist (to discuss the MRI results), the neurologist also mentioned MS but he said that I would need to undergo some further tests to rule anything else out. So no definite diagnosis, despite having two attacks of MS (the one in 2012 and the one this year), plus brain lesions & demyelination.

In my case, they ran further tests (bloods & MRI of both brain and spine) and they need to do this as some things mimic MS symptoms while others also cause actual brain lesions (the things I’ve read are sarcoidis, lupus etc). Therefore having brain lesions plus a CIS doesn’t necessarily mean that it’s MS.

That said, perhaps your CIS affected your motor skills which is why they mentioned informing the DVLA? My symptoms are awful pain, numbness, pins & needles and mild spasms, none of which would affect my ability to drive - which is maybe why they didn’t ask me to tell the DVLA?

A few months ago I checked the NICE guidelines on MS and it recommended that clinicians raise the possibility of MS as early as possible with a patient whom they suspect of having MS. I guess this is why we were both told early on that it could be MS prior to any relevant tests being completed.

Good luck with it all.

C