Does anyone have Clinically Isolated Syndrome (CIS)?
Hello, I went to 2 doctors and was told they cannot say for sure that I have MS based on the factors. I have the lesions in 2 of the 4 areas in my brain only nothing in spine or neck typical of MS. No bands on my spinal tap, high igg for inflammation, and one flare-up numbness in right side of mouth, lips, cheek, tongue which was treated with prednisone steroid.
One dr told me to start Ocrevus practicing 25+ years, another dr told me if it were him he would wait but I am afraid if it is MS, which both doctors believe it is but cannot say for certain with the criteria, if I get another flare-up I am scared the effects could be permanent. The first doctor said Tecfidera another choice but he would choose Ocrevus. Second dr said he would personally wait but it could be years before something happened and taking a chance of a flare-up and lasting condition or he recommended if I wanted to start something Tecfidera. Does anyone have any recommendations?
Has anyone had CIS? Did it turn into MS? After how long? Did you treat right away? Thanks for your help!!!
Hi
, thanks so much for reaching out! I commend you for seeking out opinions from different doctors, but also understand how frustrating it must feel to get differing advice! We cannot offer medical advice for your own safety, but I thought I'd share these articles with you on others' experiences with Ocrevus and Tecfidera in the hopes that they're helpful -
https://multiplesclerosis.net/living-with-ms/first-ocrevus-infusion/
https://multiplesclerosis.net/living-with-ms/taking-tecfidera/
Additionally, here's some more information on clinically isolated syndrome - https://multiplesclerosis.net/living-with-ms/clinically-isolated-syndrome/
Hope this helps and that others will respond and share any personal experiences they have with you as well!
Best,
Shelby
MultipleSclerosis.net Team Member
Hi
,
When I had my first really big attack (I was temporarily blind in one eye for 3 months), I was diagnosed with optic neuritis. The doctor said that it could have been a one-time event, or that it could be related to developing MS later on. I didn't have any brain lesions at the time, and we didn't scan my neck then. This would have been called clinically isolated syndrome if there had been lesions, most likely.
It would be five years and several different mild symptoms (that in hind sight could have pointed towards MS) before I experienced another attack that suggested MS. Then, I had lesions in my neck to show MS.
If I could go back in time knowing what I know now, I would probably have wished for more testing. If it was suspected that it was early stages of MS (just without meeting all of the necessary criteria) and if I had been offered treatment, I probably would have taken action and treated.
But you never know. A single attack may be just that...a single attack. Sometimes it's important to wait for greater evidence of MS to develop because misdiagnosis is a problem. I would expect that both neurologists suggested that you undergo follow-up testing (MRIs) at some time in the future to see if there were any change. Or that you should call promptly if something new came up with symptoms.
It's not an easy decision. I wish you the best. Be sure to keep in touch with your doctors and let them know how you are doing.
--Lisathanks so much Lisa!
