Thursday, December 8, 2011

A multiple sclerosis wish list

Writer, ms.about.com

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.

7 comments:

  1. Julie thank you so much for your "MS Wish List"! Perfect timing for the holidays. I too have gone probably 20 some years with possible then probable diagnoses with no definitive answe and no treatment. Though I had treatments and even surgeries for nerve pain problems which I think were probably MS symptoms. Now I have extensive lesions on my brain and my illness is rapidly progressing. All I want for Christmas is.....

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  2. I was in MS "limbo" for 2 years...I had a "clinically isolated syndrome" that would "probably become MS" at some undetermined point in the future. If only the doctor could have done a definitive test, like you mentioned! And now, although I would give just about anything to quit with these pesky daily injections, I'd give even more for a TREATMENT that would help to fix the damage! Thanks for your post.

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  3. I waited 11 years for my diagnosis and now I have missed the relapsing remitting stage and have become Secondary Progressive in just 7months from being diagnosed. I feel I have been cheated of time to prepare for this. I wish they could have diagnosed it earlier. Still tomorrow will be fun going shopping to town for the first time in an electric wheelchair. I can always run people over if they get in the way. Must keep smiling that is all I ever hear

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  4. I waited 11 years for my diagnosis and now I have missed the relapsing remitting stage and have become Secondary Progressive in just 7months from being diagnosed. I feel I have been cheated of time to prepare for this. I wish they could have diagnosed it earlier. Still tomorrow will be fun going shopping to town for the first time in an electric wheelchair. I can always run people over if they get in the way. Must keep smiling that is all I ever hear

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  5. I waited 11 years for my diagnosis and now I have missed the relapsing remitting stage and have become Secondary Progressive in just 7months from being diagnosed. I feel I have been cheated of time to prepare for this. I wish they could have diagnosed it earlier. Still tomorrow will be fun going shopping to town for the first time in an electric wheelchair. I can always run people over if they get in the way. Must keep smiling that is all I ever hear

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  6. I agree with Sue. Let's run them all over with our power chairs. :) I was diagnosed in early 2010. I really believe I had MS back in the late 70s early 80s but never got a real good diagnosis as I have a cochlear implant and couldn't have an MRI as I have a magnet in my head. I remember seeing a neurologist back then and being treated for restless leg syndrome. I had other symptoms too only no one knew what it was. I like to see a much more simplier way to diagnose and treat MS. I just keep having a positive outlook for my future. I'm not on meds yet though. Thank God for that. Only my MS, though not really completely diagnosed to what type I have, is getting progressively worse. I still walk with difficulty in my home with a walker. Outside I definitely need to use my power chair to get around. This posting is a great way to learn and hear from others. Thanks.

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  7. In addition to the wishes above, I wish for low-risk, oral DMDs. I also wish they made larger steroid pills than 50 mg so I wouldn't have to take 25 each day during relapse.

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