Radiographic MS, no symtems but MRI shows new leisions .....now what

[heather122]

I found out from an MRI (for Migraines) that I have MS over 5 years ago. Since then I have ahd MRI's every year that show no progression. For the first three years I took rebif. My Dr thought that would slow down any symtoms I may have in the future. I have never had any symtoms. Other than the MRI and Spinal tap it doesn't feel like anything is wrong. After quiting rebif I felt so much better. I was getting migraines 3 to 4 times a week and when I quit they all cleared up. Today I had what I was told would be my last MRI for a few years since I have had no changes and no symptoms for 5 years. One hour after my test the Dr. called and said I have a new lession on my left frontal lobe and possibly one on my brain stem. I am so scared. I have no idea what to do. My Dr told me to look into copaxone. I still have no symptoms I don't want to take shots. Anyone wlse out there like me?

[me8k]

RIS

I am diagnosed with radiological isolated syndrome as well. My Neuro didn't have me start a Dmd. There are different opinions on this . I am going on 4 years no symptoms no changes on mri. Have you thought about getting a second opinion?

[pennstater]

There are more options than shots. There are oral meds now and infusions. I would take a look at the study referenced in Brain Health: Time Matters in the general Forum.

It mentions patients symptom free, but with lesions indicative of MS. I believe the recommendation is to treat with a DMT. The thinking is damage starts to occur to brain reserve early in the disease even when symptom free and/or no lesion changes.

I would review with your neuro and get familiar with each DMT and the pros/cons as they fit your life. Unfortunately, no one will be able to say if lesion would have occurred on Rebif, but the fact one occurred when off, would make me get back on something. But everyone's risk tolerance is different, something you only can assess with input from others, medical and personal.

Good luck. Keep us up to date!

[TinaP303]

Your diagnosis sounds familiar to mine. Migraines were one of the reasons I went to the neurologist in the first place. Facial pain on one side, top jaw area the other.

My MRI showed lesions that were "there for quite a while", but the neuro didn't want to put an age to them. I didn't want to take shots either ::shudder:: so we agreed to do nothing for a while.

3 years went by, new MRI, new lesions. ugh. All this time my only symptoms are the migraine & pain in the face (now diagnosed as Trigeminal Neuralgia). I still don't want to do shots ::shudder:: so the neuro gives me info on some oral meds, gives me time to read and think and make a decision.

I've been taking Aubagio (one tiny pill a day) for almost 10 months. MRI after 8 months showed no new lesions. There are 3 orals pills -Aubagio, Tecfidera, Gilenya. Check your insurance coverage - sigh -it an be tricky, but one of them would be a good place to start.

[me8k]

MS/Lesions

I am confused by how people are getting diagnosed by MRI alone ? From everything I ever read
there is not one test that shows MS?

[Thinkimjob]

I have no idea, though it is probably better to be on the anti-MS drugs, if you have visible MRI lesions.
I know most/all of them suck, but if you can squash this disease before you have noticeable symptoms, then do it.
The side-effects are nasty, but not near as bad as full-blown MS.

[me8k]

RIS

I agree but other things cause lesions , without knowing for sure what my lesions were from , I personally wouldn't be taking a DMD.

[pennstater]

I agree but other things cause lesions , without knowing for sure what my lesions were from , I personally wouldn't be taking a DMD.

I was diagnosed by MRI. Blood work was done to rule out other mimics and since brain lesions were in location/pattern consistent with MS, along with spinal lesions, was diagnosed and second opinion at MS clinic agreed. Since then, 2 other neuro also reviewed and stand by diagnosis.

Granted, I had a symptom at the time consistent with MS, but 13 years prior had an episode that was most likely MS, and mostly quiet after until 2006. I really wonder if I would have the permanent symptoms I do now if I had been diagnosed or followed via MRI like they do today and had started on DMTs then or shortly thereafter.

I am assuming that the people diagnosed by MRI have had tests to rule out other causes. You are right that MS is a diagnosis of exclusions, but once that has occurred and second opinion concurs, O would start on DMT, as all evidence says the earlier, the better. But it is a personal decision, a risk assessment everyone must do individually.

I do hope you are not diagnosed and never have to make that call.