Last reply 11 months ago
Radiologically Isolated syndromes

Hi all,
My story begun around 8 months ago. I have not been feeling well and my doctor ordered MRI along with many other investigations. My MRI showed multiple lesions “suggestive of disease of deminatig nature”. My nuerologist started me on avonex, although I do not have symptoms that are typical of MS. But she labeled me as Radiologically Isolated syndrome. She thinks I’m high risk for conversion because of the following:
1- I have multiple lesions in the brain and one in the spinal cord
2- spinal tap is positive for oligoclonal bands
3- VEP: mild bilateral abnormality
4- age 33 ( she considers age as risk factor).
I have started avonex back on February and the side effects are not necessarily becoming easier. Not sure if I should keep on taking it or any other medication for MS? Once gain, I have no, and never had any symptoms typical of MS.

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11 months ago

Hi @aziza and welcome.

You have a very proactive Neurologist, as not all neurologists will prescribe a Disease Modifying Treatment (DMT) to prevent a transition to a diagnosis of MS.

Should you keep taking it? Now, that’s a question for the crystal ball. MS, as a neurological condition, is wildly unpredictable. What is known is that there are presently lesions in your brain and on your spine, which is indicative of damage caused to your Central Nervous System (CNS).

This damage does not have to cause noticeable symptoms, although, the next one might! The side effects of Avonex may be a small price to pay to avoid a disabling lesion. But, we can’t see the future.

Your next MRI will be interesting. It may show no further lesions, so you may assume that the Avonex is working or that your condition was not going to progress. Alternatively, it could show additional lesions, which would allow a diagnosis of MS and a review of your DMT, to consider a stronger, more effective option.

11 months ago

Thank you very much. I actually had a follow up MRI just a couple of days ago. I’m expecting the report next week. 🤞🏻
Thanks again

11 months ago

You do have a very pro active Neuro . I feel this is a positive thing. Hopefully your mri shows no new lesions and you continue to have no or few symptoms

11 months ago

What made your Neurologist arrange mri if you had no symptoms?

11 months ago

Hi @maureena
I was originally complaining of involuntary muscle contractions. It was actually my family medicine doctor who ordered my first MRI and then referred me to nuerologist.
My neurologist, when she saw the MRI, decided to do further investigations:
1- spinal tap: which came back positive for oligoclonal bands
2- visual evoked potential: which showed mild bilateral abnormalities (meaning that optic nerves have been affected slightly). Although I don’t feel anything.
According to her, muscle contractions are not typically considered a sign of MS.
Therefore, she decided to put me on avonex because “ I’m high risk for conversion” given all of the above and arranged for a follow up MRI which I have done already.

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