Anyone else still diagnosed as CIS and not MS?

New diagnosis and before diagnosis
1

Hi, have my neuro appt tomorow, I’m a little anxious as expected. I know that not everyone who has a CIS goes onto develop MS. I have lesions on brain and spine so have a much higher chance than someone without MRI evidence (around 80% i gather). I just wonderd if there is anyone on here is still diagnosed as CIS and not MS with multiple lesions ? Had my CIS in Feb, new MRI shows no new lesions and I’m around 95% recovered. I’m in no rush to be diagnosed with MS and would prefer to be in limbo land… Thanks x

2

I have CIS with brain lesions but am still recovering from the symptoms. Don’t like the idea of living with a black cloud above my head of a possible relapse and MS diagnosis though :frowning: How have you found it?

3

Was diagnosed with MS today, the neuro said he couldn’t be sure though but the latest MRI seems suggestive. He also said the new lesions I have on brain and spine may be from the CIS period and might not more recent but I now could have an LP if I wanted. I guess its the 3rd MRI scan that will show if its multiphasic or not. xx

4

Hi Anon

I am sorry to hear your diagnosis, especially as you were happy being in limbo. I hope you are ok.

Could I ask what CIS is please? Sorry to be dense

PG xx

5

Clinically Isolated Syndrome. Yes I am ok thank you, i just feel the best case scenario for me now is not to have any new relapses and then in 9 years and 3 months I could be diagnosed with Benign MS. xx

Benign MS

If you have a small number of relapses followed by a complete recovery, you may be described as having benign MS.

Benign MS can only be diagnosed retrospectively once you have experienced little or no disability for a period of 10 to 15 years.

A diagnosis of benign MS does not guarantee that you will be free of problems, as a relapse may occasionally occur after many years in which your MS has been inactive.

Sometimes people call a period of mild symptoms right after a diagnosis “benign MS”. This is often shown later to have been a period of .

This means that the person in fact has - it’s just very mild to start with, or has more sensory, less mobility effects.

6

Thank you for coming back to me. I have had Optic Neuritis, so I suppose that would be a CIS. Seeing neurologist on Monday, so I suppose the ‘journey’ begins there.

I have everythng crossed for you that you have no more symptoms for AT LEAST 9 years and 3 months and that you get your benign dx :slight_smile:

PG xx