A multiple sclerosis wish list

I’m pretty sure that if every person living with multiple sclerosis made a list of their wishes, all of the lists would have one item in common: we would wish our MS away. I sure would. I’d like my MS to go and to take all of the symptoms, the injections, and the nervousness about the future with it.

What do you think the doctors and the researchers who focus on MS would wish for? To me, this is a pretty big question, as these people are our partners in the MS fight. I would like to think that their wishes around MS would pretty well map onto ours.

The editors at a new journal, Multiple Sclerosis and Related Disorders (January 2012), came up with five goals on a “multiple sclerosis wish list.” I’ve paraphrased what they would like to see happening in the field of MS:
 
Figure out what causes MS
This one is crucial to being really successful at anything else. If we know what exactly is causing MS, we have a much better shot at learning how to prevent it and how to treat it.
 
Get a specific diagnostic test for MS
 We need a biomarker that can tell docs with certainty whether or not a person has MS. A biomarker is something in our bodies—a gene, a hormone, an antibody—that can be measured to give information about health status and specific diseases. Simple examples include such things as: high blood glucose levels that can indicate that a person has diabetes, or a positive antibody test to hepatitis C, which means that person has been infected with that virus.
 
Right now, we do not have a test like this for MS. Many of us had symptoms for weeks, months or years before we received an MS diagnosis. (In my case, docs tell me that I probably had MS for 15 to 20 years before I was diagnosed, although I had seen several specialists for what I now know were MS symptoms.) Other people live in “MS limbo,” being told that they “probably” have MS, “might” have MS, or will likely develop it in the future. We need a yes/no type of test for MS.
 
Find effective treatment for chronic MS
 This means that, while we have drugs that can suppress progression of disease and prevent relapses in people with MS, we do not yet have anything to rebuild the damage that has been done and allow us to regain some of what is lost. Really, the current drugs are not so much treatment, which I associate with getting better, as they are attempts at "damage prevention." We need something that will repair what MS has done to us.
 
Prevent MS
While this sounds lofty and out-of-reach at this time, there are actually some possibilities. Vitamin D supplementation and vaccination against Epstein-Barr (EBV) infection are two very tangible (and possibly feasible) measures that could be tried in preventing some cases of MS. The difficult part would be measuring their impact on MS incidence and prevalence. It is one thing to launch a polio vaccination campaign and see the immediate effects of preventing thousands of cases of childhood paralysis. 
 
It is altogether another matter to show that vitamin D supplementation or EBV vaccines have any impact whatsoever on a disease that is fairly rare (1 in 1000) and which may develop after decades of vitamin D deficiency or exposure to EBV. It’s a noble thought, but a rough sell to public health officials. Still, they are avenues to pursue.
 
Improve and expand direct patient care
This one is easy—we need more MS-specific clinics that offer comprehensive care. MS is a complex disease and we need the docs who understand it working together where they are easy for us to find.
 
I like that list. It makes me happy to think that this is what the MS docs and researchers might be thinking about. What are your thoughts? What would you like to see added to this list? Give us your thoughts in the comments section.
 
0 Appreciate this
| Reply
Julie

Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.

Leave a Comment

Thanks for sharing your thoughts with the MSconnection.org community. Please note comments are moderated.

    0 Comments

    Blog post currently doesn't have any comments.