Last reply 1 year ago
RIS – what to expect?

Hi there,

Does anybody have a Radiologically Isolated Syndrome diagnosis?

This is a very short summary of my medical history:

2 years ago I had a regular MRI scan and I accidentally found out I had brain lesions, most probably related to multiple sclerosis, but I have never had any symptoms. I was told that what I had was Radiologically Isolated Syndrome (RIS).
Over the past 2 years I have done various medical analyses:
– head MRIs (the lesions look the same as they looked 2 years ago, no new lesions; possibly 2 of them are active)
– spine MRI – no lesions on the spine
– evoked potential tests – all good
– lumbar puncture: IgG Index = 1.023 and oligoclonal banding = positive

In about one month I am going to go to Brussels, to see a neurologist at the National MS Center.
Can anyone tell me what I should ask? What can I expect if I have a RIS diagnosis? Can you recommend any other medical investigations?

This is the very first time I ask somebody about this condition.
Any help is highly appreciated.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
1 year ago

Hi @obelix and welcome.

Radiologically Isolated Syndrome (RIS) is a new one on me, but it seems another of these vague conditions, which defies a “proper” diagnosis.

I found this definition of RIS, which may be useful :-

https://radiopaedia.org/articles/radiologically-isolated-syndrome

If MRIs are showing no progression, then it’s a bit of a wait-and-see situation. It might progress to a definitive diagnosis of MS, or it might just stay the way it is. If you have no symptoms, then you can understand the RIS diagnosis, which suggests it’s better to “let sleeping dogs lie”!


obelix
1 year ago

Hi @stumbler,

Wow, what a comprehensive answer, thank you very much!
The link you provided is really useful, I now have a clearer idea on RIS.

Wait-and-see is what I have been doing for the past 2 years; it seems this is the path I have to take, at least for now.

Thanks again for taking the time to help me, you guys are really great.
I have read other posts from you, I appreciate your optimistic spirit, so I hope you have one of those “better days” today 🙂


kinga
1 year ago

Hi,
Im in a similar point so please let me know if you find anything out when you visit National MS Center!
I have just one lesion on my spine, Positive for oligobands and normal Evoked potentials.
I guess its the beginning of MS but who knows?


vasy
1 year ago

Hi @obelix
Unfortunately, elevated IgG index with positive oligoclonal bands — OCBs (do they specify OCB type e.g. 1, 2, 3 or 4?) with such MRI findings is highly suggestive of MS. Yet if they are unsure if some of your lesions are active (e.g. accumulate contrast agent) on those MRIs, definitive MS diagnosis still could not be made according to the current criteria, so wait and see.


sandwich
1 year ago

Barts MS Blog have posted about RIS a few times. If you do a search you should find info. I think I read many people with RIS do not go on to develop MS.


obelix
1 year ago

Hi,

Thank you all 🙂

@kinga: Sure, I’ll definitely let you know.

@vasy: no, there is no OCB type mentioned on my results sheet; I didn’t know there was such a classification. I can ask, but it’s probably too late 🙁 Nevertheless, I’ll read about these OCB types you told me about.

@sandwich: thanks for suggestion, I found the blog; I’ll read everything I find on RIS. The first article I found was about the healthy relatives of MS patients. I had an uncle who had a MS diagnosis 20 years ago or so. Not sure his case is relevant to my situation (he was a first-cousin of my mother), but it’s always good to be informed


obelix
1 year ago

Hi @kinga,

So…I’ve been to Brussels, to the National MS Center. Here is what I have been told:

– technically, RIS involves having lesions in 4 regions of the brain; in my case, lesions are located in only 2 of those regions
– in general, possible causes for lesions are: migraines, abuse of alcohol, drugs
– I suffered from migraines when I was a teenager (I am now 29), but it cannot be the cause of my lesions because there is proof of activity at the moment
– he thinks it is MS, but no two MS people experience the same symptoms
– there is 1 out of 3 chances to develop MS symptoms, at some point
– I don’t have to make any changes to my life, at this point (i.e. avoid dairy products, avoid vaccines, avoid heat)
– since I have no symptoms, there is no treatment
– there is no need to have MRIs done every year or so; even though there are new lesions, from the medical point of view the situation remains the same – no treatment if no symptoms

Basically, the doctor suggested to live my life to the fullest and avoid being over-preoccupied with my condition.

Hope this helps 🙂
Looking forward to hearing from you.


kinga
1 year ago

Thank you Obelix! Thats really interesting 🙂

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.