I’ll never forget a comment that one of my neurologists said to me during my diagnosis process. “There has never been a more promising time in the history of multiple sclerosis,” he said, “than right now.”
I’m sure that the same could be said of every day that has passed in the nearly 17 years since I was diagnosed. There are more and more powerful drug treatments for the disease. Primary care physicians are more aware and better equipped to notice the first signs of MS. Diagnosis is happening earlier (in both age and stages of the disease). And once a person finds out they have multiple sclerosis, there are far more resources for them and their families than ever before.
But there’s still no cure.
Part of the reason finding a cure for MS is so difficult is that “cure” means different things depending to whom you speak. For the most part we fall into one of three camps as to when it comes to multiple sclerosis:
- Someone who is relatively new to diagnosis and symptoms of MS
- Someone who has accumulated significant damage and disability due to MS
- Someone who is most concerned about children or grandchildren developing MS
Those from group 1, who are early in the disease, see a cure as stopping the MS cold in its tracks and preventing new disease activity or progression— no more attacks, no more lesions, and no more disability. If that goal were to be achieved, the current level of damage could be contended with and the people in group 1 would be happily “cured.”
For those of us who have had MS for some time and are now experiencing or looking at accumulated disability — physical and/or cognitive — stopping the progression is not enough. We need the demyelination clock turned back a few years. We’re looking for a fix to the damage this insidious disease has done. We want our functions back. For this group (2), a cure means repair and regeneration of myelin and the nervous system in total.
In fact, if repair to the damage could happen at a rate that kept up with the disease, we might consider ourselves cured even if we kept having attacks, but got back what we lost soon after.
People in group 3 see a cure as stopping the disease from ever occurring. This may be the most difficult of all of the cures. It could be argued that cures 1 and 2 are merely symptom management; number 3 is some sort of a vaccine solution which would keep the disease from developing in the first place.
In many ways, research into “disease halting” drugs has come a long way since I was diagnosed. (Mind you, there were only three approved meds back in 2001 when I heard the words, “you have multiple sclerosis.”) Many of us have seen real benefit from disease-modifying drugs, so “no evidence of disease activity” — the goal of new drugs which enter the market — is arguably within reach.
Funding research into the remyelination of the nervous system is underway for those in our second cure group. I remember when it was taught that nerves could not re-grow and regenerate. We now know that that is not the case and very promising international research is happening on this front. This, for me, is the most exciting research going on in the MS community today, probably because I fall into this group. Simply stopping the progression isn’t enough for me.
The ultimate “cure,” of course is to stop MS before it even occurs. This is the cure that will take the most work and will probably not happen until we are successful with the first two.
Much will have to be understood about the cause of MS before we get to the point of an MS vaccine — if, quite frankly, that can happen at all. But for parents (or people hoping to be parents one day), the great hope is that we are the last generation to have to live with this disease.
I was told at that diagnosing appointment that “within ten years, we’ll be well on our way to curing MS.” I don’t know that I’d call our progress since then “well on our way,” but we have made significant steps in the right direction.
Fingers crossed that the end of 2018 finds us closer to it than the beginning has.
Wishing you and your family the best of health.
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Trevis L. Gleason is an award-winning author, chef and blogger who was diagnosed with multiple sclerosis in 2001. He lives in Seattle, Washington and County Kerry Ireland with his wife Caryn and their Wheaten Terriers, Sadie and Maggie. His website is trevislgleason.com. Trevis’ book, Chef Interrupted, is available on Amazon. Follow him on the Life With MS Facebook page and on Twitter.