Hi, can any one explain Clinically Isolated Syndrome to me properly please?
Over 5 years ago now I had some numbness on waking up, tingling, double vision and just generally felt unwell for a couple of weeks. And then the symptoms just all disappeared.
At the time my dr said I probably had a trapped nerve and my optician said the double vision could be caused by a lazy eye (which had never been diagnosed before).
Recently I spoke to my dr again and she said that the only way I will know if I have ms is if the symptoms come back and then they can do tests. I feel like I have it hanging over my head constantly tbh.
Any way I read about Clinically Isolated Syndrome and was wondering does any one know what the chances are of developing ms if you have this?
Also I don’t understand what it is if it’s not the onset of ms? xx
It is believed to be about a 30-70% chance, if youve had Clinicaly isolated syndrome. Which i know is not very helpful. Chances of developing definite MS are increased by factors such as smoking.
Because multiple sclerosis is defined by 2 attacks seperated by time they generally do not diagnose someone until they meet this criteria, although there are some exeptions,
To understand whether or not its the onset of MS they need to do tests- MRi scan, lumbar puncture, VEP test
hope this helps
I have seen posts on here from people who have gone decades from their CIS to strange things happening again.
I had optic neuritis which was my cis but then over the next two years had more and more relapses so there really is no knowing.
I also had the fact my mom was ppms so I think the odds were against me.
Take care
Pip
hey I agree with Raymond on this…more tests am afraid…and they need to monitor you…I had On recently still recovering but my eye went lazy…still e is…but that could be unique to me…as my other eye was lazy anyway but they switched once ON started…very confusing!! I would go back to your go and see what they can do…how are your symptoms now? do keep a diary too…it’s amazing how much we think we remember …lol it can’t be easy at all but hang in. there…
Hi.
I don’t fully understand it either. I have read the gen about it but there really isn’t much info beyond the basics.
I have had one attack (that I know of) and have had an MRI show one lesion.
Does this mean it’s CIS, for now? If I had had other attacks would there be more than one lesion?
Does an attack always cause new lesions?
Can you have a subtle attack that you don’t know you’ve had that will show up on your next MRI and scare the hell out of you?
What if you have had one attack and you are not started on any DMD’s yet you had earlier attacks that you weren’t aware of, therefore moving it on from CIS to MS and warrenting meds?
So many questions!
the way i understand it which could be wrong is that lesions dont always correspond with symptoms, you may have many lesions but few or no symptoms. I have quite a few lesions but my symptoms are not too bad. I think doctors are more concerned if the lesions are active or not. Im not a doctor though so this is just my own thoughts here.
My neuro said that the lesion I have (right side of brain) corresponds exactly with my (left-sided) symptoms.
Hi Worried,
Have a look at the following link. It explains a bit about it and there’s also a CIS factsheet available to read too: www.mstrust.org.uk/atoz/cis.jsp
Hope that helps
Debbie xx