News for the Multiple Sclerosis Community

What do you think triggered your MS?

Genetics
10% (78 votes)
Pathogen (virus, bacteria, etc.)
24% (189 votes)
Diet
3% (23 votes)
Toxic Agent
8% (60 votes)
Trauma (physical or mental)
24% (193 votes)
Other (leave comment after voting)
9% (75 votes)
Absolutely No Idea
22% (178 votes)
Total votes: 796
To the extent that pathogens (viruses, bacteria) and mental or physical trauma share a common feature, i.e, a rise in cortisol levels, they could be considered a single "trigger" factor in MS.
Sorry . . . rise in cortisol wouldn't cause demyelination of axons. Although a significant rise in glutamate levels could cause excitotoxicity from a huge influx of calcium through calcium ion channels. Each person would still have a different etiology because each person is built different, even though we share similar genetic structure. To find where the "chink in the armor" is for each person is a better path to follow. So, there may be a "common feature" between people WITH multiple sclerosis, there wouldn't be a single common feature that takes advantage of everyones SUSCEPTIBILITY. You think after over a hundred years of study scientists just haven't found the right "trigger?" Not likely. It's much more complex than anyone ever expected . . . and continues to be. With new technologies like micro-arrays, and gene chip cards, we may be able to tailor therapy to each patient someday. For right now though, it's like what pathologists do . . . we have to figure out what happened INDIRECTLY through experimentation in other areas and indirect observation of pathology (i.e. MRI). Can't open a person's cranium and poke around--or observe DIRECTLY--while they're still alive.
The only disease I had as a teenager was Glandular Fever (EBV). However, my first MS attack took place 24 years later and I can honestly say that I had pretty perfect health between the two events. A friend at University had Bells Palsy following her episode with Glandular Fever and was tested for MS (in the mid-80s). She was given the all clear and has had no problems since. At my appointment with one of the leading UK MS specialists (recently received a huge grant from the NMSS)he asked about my previous health -when I mentioned Glandular Fever he said that the vast majority of MS patients he sees have had a brush with this virus. I know that some researchers have identified EBV in MS patients at higher levels than those without MS. A virus such as MS would also explain some of the MS outbreaks that have taken place e.g. on Scottish islands following an influx of British soldiers. I'm not sure if EBV is more prevalent in countries above / below the equator which might explain its geographical split. I recall when I had the virus that the blood tests always came back negative but my GP was 100% confident that I had glandular fever. This might explain why it is difficult to identify a specific virus in those with MS - some individuals show positive others negative. If it was easy it wouldn't be MS!
I received four immunizations last year before I went to Africa for hepatitis, yellow fever, tetanus and typhoid all in the same week. Six months later I received my second hepatitis immunization shot. Four weeks later I started having symptoms which became my first exacerbation. Three months later I was diagnosed with MS. Coincidence? I don't think so..
Poll was extremely symplistic. I have myself and two sisters and two cousins who have MS. It is possible that my mom and her sister, my aunt had MS. Do I think Genetics had something to do with it? Yes!! But I do also think that virsuses prior to puberty have something to do with it? Yes!! I and my Two sisters were exposed to Herpes Simplex 6 prior to six years old. In addition my sisters who got the disease at 18 and 40 respectively, I was exposed to much stress the year before I was diagnosed, at age 53, and my sisters were exposed to much stress prior to their diagnosis. I do think that my exercise and excellent diet may have held it off longer. It is also possible that less exposure to toxins brought on my MS much later, but who knows? Asking for one answer only is an insult to people with MS! I do think that my late onset allowed me to get a BA in Math and a masters in Biostatistics, and to pursue a career with computers large and small, and later vith voice and data computer communications and networking. Because of my background I am medically knowledgeable, and I run a support group for peopl with MS in the southbay of LA county. Before I was diagnosed I was very up- to- speed on MS for the last 30 years because of my sisters' MS. What is missing from your website is what you have been doing to "accelerate the cure" and the status of the MS projects, that you have been funding since your inception. I have a friend who wants to make a substancial donation in her will, since she has several dear friends with MS! She asked me to recommend a group to donate to. You sounded good, but without documentation on your website about the current projects, their cost, and status of the projects you are funding, and the $ amounts that that you are spending on administration, then I am going to recommend the National MS Society, because they provide the information I am asking from your organization in a more transparent way, so I can make an intelligent recommendation to her. It is a shame, since your organization might be the better one to donate to! Barbara Gregoire
Barbara, The Boston Cure Project is very transparent - on the front page click on 'about' and you can access the annual reports which provide information on progress of the project and the financial position of the organisation. The polls are never intended to be scientific but are for users of the website who have ms. All of us recognise that this is a complex disease where genetics / viruses / gender play a part. The polls allow us (the sufferers) to share our experiences / thoughts. The real work is being done by a top notch panel of academics and MS experts. Unlike most MS organisations the BCP is trying to get to the root cause / causes which should then point to better treatments. This organisation is run on a shoe-string. The NMSS website says it has spent some $500 million on research since it started some 50 years ago - and what has really been achieved? BCP are doing something different and hopefully we will see some real results in the not too distant future (the organisation has only been around for a few years). Your friend can leave her money to whoever she wishes, but it will be sad if you are advising her based on incomplete information. Spend a little time on this site, read the annual reports and the newsletters and understand the aims / values / goals of this organisation - I think you might be pleasantly surprised. The head of the organisation has MS himself and his wife and family give their time. I was dx 18 months ago and find this site incredibly useful for updating myself on MS news etc. I think you may have formed a judgment too quickly.
art's picture
Hi Barbara, Bromley points out how you can find out everything you want to know about us. If you can't find out more about our organization than the NMSS then you either haven't looked closely enough or you can call me 781-487-0008 and I'll make sure that information is up there.

As to our polls, there is a very obvious "other" option and the ability to leave a comment - as you undoubtedly figured out. As Bromley pointed out, the polls are merely for sharing experience, not for a publication.

I am the president and co-founder of Accelerated Cure Project (formerly Boston Cure Project), my number is above, and I'm happy to address any concern you have should you wish to resolve your concerns. I can also provide you another perspective on the metrics you seem to be concerned about. By the way, where does the NMSS provide a status of the projects they are funding?

Art Mellor

I think it was a combination of having mono/epstein barr as an adult (within a year of dx) and having a baby....first attack happened 5-6 months postpartum.
My acute onset of MS was caused by the hormonal shock of a hysterectomy, which was debilitating. The MS nuerologists all knew right away the cause. The general nuerologists did not. The endocrine system and the nervous system have a close association. Menopause is puberty in reverse and happens gradually over many years, leaving the ovaries working at a gradual lower level never a complete cut off. When it happens in 58 minutes and is absolute, the hormonal shock is very severe.
In reply to mattc . . . the questionnaire was NOT online. It was part of a (news) story on another MS news board (Cowboy's MS news) where they were asking for volunteers. It was done through the mail, and the the results won't be known for a LONG time. Here's the link: http://www.mult-sclerosis.org/news/Dec2001/UCSFAna lysingGenesInMS.html The other post about a hormonal trigger is intriguing. I had weird symptoms related to hormonal problems for about a year leading up to my first MS related symptoms (parastethias in my feet). There might be something to your theory worth pursuing in the future. Problem is . . . MS might turn out to be caused in different ways to different people.
I blame Osama Bin Laden!!! I started having symptoms about a week following the 9/11 attacks. I can remember crying everyday. Thinking, pondering, dwelling on the fact that thousands of people had been murdered. The families it affected. The horror of the whole thing. The television pictures!!! Then I shut it off and it hasn't been back on since. I hate the 6 oclock news!!!!
I believe the cause of MS is a result of a few things: 1) Your genetic predisposition 2) Virus exposure (I had the chicken pox 3 times but never Epstein Barr (aka Mono)or atleast it never showed up in the many tests run to see if it was present. As I was being diagnosed with R/R MS, numerous blood tests were run on a range of titer levels and Epstein Barr levels were off the charts. (My partner however did get hospitalized in college with Epstein Barr - could the two have mutated within my already weakened immune system? I think so)! 3) Emotional/mental & physically tramas can trigger just about anything from a headache to heart attack why not MS? 4) Lastly, I also think diet and environment play a role in identifying why some of us do and some don't get MS.
It would be great if it were that easy to identify--treat the pathogen, and you cure the underlying cause of damage. But, it is just too complicated, at a molecular level, to diagnose such a scenario (though not improbable), as well as identify the other factors that affect the initiation and course of MS indirectly. The multifaceted nature of the etiology that you describe is the most probable "barrage" of factors that lead to MS. The EXACT initial trigger is as of yet unknown though. So at this point, everything is just a "best guess."
I have been wondering for some time why 'The Project' doesn't look at a comprehensive questionnaire for us to circulate. I'm thinking there is an untapped quantity of data out there about our pre-symptom lifestyles which could start to paint a clearer profile of an MS-er and who knows, raise a few new lines of inquiry. Data from an online quiz with dropdowns or radio buttons could be processed easily and quickly, and I'm sure with a bit of chat room 'raid marketing' we could get thousands of people to submit. Obviously the questions would have to be set by people working in the field to be relevant. Any reason why not?
art's picture
It's a great idea. The only reason at this point is time/effort (can you do it?). Once we've finalized the questionnaire for our main study, it might make sense to put it on the web for informal data collection, too. Hmmm...
The University of California at San Francisco already did such a questionnaire. They are still culling through the mountainous amount of data. They also included the option to donate blood samples from the person with MS, any family members and (this is interesting) any close friends (I guess as FURTHER control subjects).
I'd love to help, but I was thinking of questions a little more scientific and systematic than I could produce! Any Neurologists out there with time on their hands? I thought not! Interesting that anon (below) says one was already done - if it was an online questionaire it could be pages long but self analysing if the database was set up right, and self circulating.
I was diagnosed with MS in 1986, the onset was stress as I then had three children ages 5,3,1. I was 21 years old, married and working to help support my family. My MS has come out of remission over the years and it has also made me legally blind. I have noticed that each time something has happened to me that I was under alot of stress with death, children/parents or other. I have learned to handle stress in a better way so that I do not put my body at risk for another attack. I do realize that there may be something else that actually happens to trigger the relapses but I do feel that stress is the genuine trigger for me.
Many things contributed to my ms acquisition and manifestation. From my northern European genetic predisposition to my high fat diet to having grown up in the cloudy industrial belt of the U.S. to the abuse I suffered as a child resulting in subsequent chronic depression and drug use as a young adult. I guess I'm saying that there should be an "all of the above" button on this particular poll (lol).
We all know the story told in A Civil Action with John Travolta and sickness in Woburn, MA. I have also heard the same chemical they were using then and there was used to tan animal hides in the 60's. Being from the North Shore of Boston where tanneries were very predominant then, there are an alarming amounts of people afflicted with MS along with Fibromyalgia and Lupus. I wish someone could investigate that.

I had oral surgery to extract an impacted molar 4-5 months prior to first symptoms.