RIS/MS

[janine01]

I have been diagnosed with Radiologically isolated syndrome. MS without the symptoms. I had a seizure almost a year ago and had my first mri. It showed 2 lesions and one enhanced. I had a spinal tap which was positive for ms. I had an mri 6mos later and 3 new lesions, another mri 3mos later  and 2 new lesions, just had another mri and one previous lesion grew 3x the size and another new lesion. Still no symptoms. A top NYC MS specialist confirms ris and feels it is ms. Has anyone had numerous lesions in such a short amount of time?

[jami92]

I was recently diagnosed with R.I.S. from Mayo Clinic after a concussion.  Initially my neurologist diagnosed me with MS due to an MRI that showed over 2 dozen legions on my brain and a spinal tap with 13 bands indicative of MS.  I suffer from horrible headaches, fatigue, shakes, limb problems some incontinence and problems sleeping.  My neurologist will not put me on any medication and is stumped on what kind of treatment to pursue.   Anyone else have this happen to them?

[Sparkysarah]

Mary's post struck a lot of truths for me. Not long after my first MRI scan and dx my sympotms appeared and I felt that all my friends felt I was just feeling sorry for myself because of the dx when I had previously appeared to be fine.

Needless to say they then saw that I was quite unwell and were wonderful and came to my rescue. Anyhow hope you continue to be symptom free but don't be surprised if something develops.

Love Sarah

[twopack]

It seems to me I remember hearing about quite a few people who have been diagnosed when MRI lesions became apparent befoe symptoms were noticed.  The lesions were found when the brain was imaged for other reasons, like an auto accident or seizure activity.  

It's usually very difficult for these people to believe they actually have MS because they have felt well.  Sometimes they are able to realize there have been signs and symptoms along the way that weren't recognized.  Often, the symptoms begin to manifest themselves shortly after the lesions are discovered.  The fact that some time has passed and you continue to consider yourself symptom free would appear to be the odd part here.

I do hope you are able to remain yourself for many many years.
Mary.

[janine01]

Hi,
My two neurologists felt that copaxone was the best for me. It has no bad side effects.
I have been on it for 3mos. They say to give it at least 3-6months to try and keep lesions at bay. I did have a c-spine mri and it was negative. My recent new lesion is in the posterior fossa (the bottom back of the brain), so it it moving closer. I'm worried because I never heard of anyone with RIS and having progressive lesions advancing so quick. Wondering if this is highly unusual.

[sllowe]

Hi there,

Welcome! I've not heard of RIS either, but sounds logical.

Were all the DMD treatment options discussed with you? I'm glad you are symptomless, thought acquiring lesions at a fast rate would worry anyone.

Hope you don't mind me asking, are all your lesions in your brain? Any in the spine?

Thank you much for joining us. You are our 1st symptomless MSer on the forum (at least from my recollection).

I look forward to hearing more about what you are going to do from here.

-Shell

[janine01]

Thanks for responding. I am on copaxone. I hear Rebif has some symptoms that are debillitating in itself.  Are you saying RIS is more aggressive than MS? I had never heard of RIS until now. They also are unsure that my initial seizure was not a symptom since it is not typical of MS. I think it was because one of the lesions on the mri enhanced and I never had any illness until then. I do have some depression and fatigue although I work full time w/o any problems. Have trouble concentrating and remembering thing from one minute to the next.
Hope to hear back from you. Thanks again.

[KenDub]

I presented with no symptoms (other than depression which came and went) and 9 lesions in different places (mostly in the frontal lobe). My Spinal tap had 10 O-bands. I had no dissemination in time, but I definitely had it in space. About 2 years later, a spinal lesion was found (when my gait had worsened). Who knows how long this spinal lesion was there, but it looked new according to the radiologist, and I believe was enhancing.

The Specialist I saw immediately recommended that I take Rebif, and I did. If your Neurologist/Specialist is recommending treatment, I would consider researching other folks with RIS who take medication. Studies have shown that their M.S. is often 'less agressive'.

Here's my summary:  I took Rebif for 9 months at which time, a Kaiser Neurologist took me off of it. 2 years later I am in a wheelchair most of the time. I can walk, but it is painful and my legs get tired pretty quickly. I also have bladder/bowel dysfunction and chronic fatigue.