Benign MS: If Only We Had Known Then What Researchers Know Now

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benign ms

Now they tell me! People diagnosed with what is termed as benign MS can benefit from disease modifying drugs (DMDs), according to a new study.

Fourteen years ago, when diagnosed as having MS, the neurologist told me that it was benign. He said it had taken 25 years to progress that far, and he didn’t see any reason why that rate of disease progression should increase in the future. But he was wrong, it did progress faster. No treatment was offered then or at any time since.

When I say “no treatment,” I mean for MS itself. I have been provided with medications to relieve pain, as well as to help me cope with bladder and bowel problems. But that’s it.

Of course, in my case, the MS is no longer benign.

A new study is now saying that, for people diagnosed with benign MS, DMDs can help protect them from greater disability.

People who have benign MS remain fully functional for decades after disease onset, according to researchers at the School of Medicine and Biomedical Sciences in New York. Disease modifying drugs were also found to help maintain this benign state over the course of their lives.

The results were published in the journal BMC Neurology, in the study, “Factors associated with benign multiple sclerosis in the New York State MS Consortium (NYSMSC),” and reported in an article in Multiple Sclerosis News Today.

MS is known for its heterogeneity, for having widely dissimilar elements or expressions. Patients with benign MS (BMS) experience little disease progression and minimal disability, sometimes even decades after disease onset. But patients with BMS can only be diagnosed retrospectively, 10 or more years after MS onset. In my case, neurologists traced symptoms in my medical records to show that I had MS in my early 20s, but I wasn’t diagnosed until I was 49 – much longer than the minimum 10 years.

Although the general recommendation is that newly diagnosed MS patients immediately start treatment, little was known as to whether BMS patients might also benefit from earlier treatment with DMDs.

Now, investigators found that both DMD use and longer disease duration significantly predicted the maintenance of BMS status at follow-up. This protective effect was particularly obvious in patients who were taking DMD both at baseline and follow-up.

And these findings do indeed suggest that early initiation and continued treatment with DMDs is beneficial for BMS patients, increasing their likelihood of maintaining a benign status.

Researchers analyzed more than 6,258 patients enrolled in The New York State MS Consortium (NYSMSC) to study the prevalence of BMS, the prognostic factors associated with BMS, and whether DMDs can maintain a benign status in people diagnosed with BMS at baseline.

I just wish that this study had been done at the time of my diagnosis, in 2002.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Multiple Sclerosis. 

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Ian Franks is Managing Editor of the Columns division of BioNews Services. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist MS, Health & Disability blog at Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.
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One comment

  1. Todd Koerner says:

    I feel your pain, Ian. I was diagnosed in 1994 and declined the first DMD, Betaseron, because I had recovered from my first symptom, and had no interest in injecting myself if I could avoid it.

    Suffice it to say, I had a severe relapse in 1999 and promptly went on Avonex, but I fear the damage had already been done. I still function pretty well, but the recovery from flares have been incomplete, and I have lost some function permanently.

    Right now, I am on Tysabri, and am weighing whether to pursue HSCT or not. The anecdotal results seem very promising, but I know that it is an extreme and experimental procedure, and may wait until more results are reported. On top of that, I’m not entirely convinced that I would benefit enough from it.

    Like many MS patients, these are the factors that I balance on a daily basis.

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