Hello. Has anyone gotten MS after their ADEM? I had another seizure last week and had another MRI which has shown a new lesion. Now my doctor thinks I have MS. Which i have been told i do not have MS. Can it take a long time for MS to show?
Hi Michelle!
My neurologist told me that I had a significant risk of developing MS within 5 years of the initial attack. I can't remember now what that number was but it was enough that some of his patients opted for the MS medications. I did not and I passed my five year anniversary with no new lesions last month. Sorry to hear about your new spot. HJas anyone tested you for gluten intolerance? My doctor found hidden Celiac disease which had led to frequent flare up in symptoms although no new lesions, just inflaming the old ones. I now try to be absolutely gluten free- not easy- but now have less pain and fewer flareups.
Deborah
Hi Deborah! So do you now have MS? I go to mg neurologist tomorrow and i will ask him about all of this. I know he said he is going to send me to a MS speciaist. I just hope this one can diagnos me. No one else has.
Hi Michelle!
No, I do not have MS. I have gluten ataxia, which is another autoimmune disorder where gluten causes my body to produce antibodies which attack the myelin. My medical team is wondering if long-term undiagnosed gluten intolerance may have led to the first ADEM attack. I have had no new lesions form, just inflammation of the original ones following accidental consumption/exposure to gluten.
Deborah
I was told that I could have MS too. I think it is just one of those things where you have to wait it out to get an MS diagnosis. MS is one of those diseases where is can take months or years to diagnose. I am going for a repeat MRI in a couple of weeks to figure out if I have MS or if it was just an acute attack. Good luck to you.
I was finally diagnosed with MS. They are starting me on a MS drug that should work and stop me from getting more lesions and most importanlty stop the seizures. I just hope the doctors are right this time. I havent had very good luck with them within the last year so i am little liery about them. MS isnt bad like it userk be 30-40 years ago from what I have been told. Its not cureable but it is very treatable.