I intend this blog to be a mixture of my personal experiences with Multiple Sclerosis (MS) and news related to MS. Hopefully, I can shed an optimistic light on MS even though it is difficult to be an optimist living with MS.
Showing posts with label MSIF. Show all posts
Showing posts with label MSIF. Show all posts

Tuesday, September 20, 2011

A Little Bit of This, A Little Bit of That

Random excerpts from my MSIF e-mailers:

A good reason to find a doctor that you like: An "study from Italy found that a good physician-patient relationship improves both patient satisfaction and adherence to long-term therapy."

A randomized trial of new drug, Simvastatin, "involved giving 80 mg Simvastatin daily for six months to people with optic neuritis. The results suggest that this is well tolerated and possibly effective in patients with acute optic neuritis."

"Alemtuzumab, a candidate treatment for MS, has the potential side effect of autoimmune disease. In this study, the authors analyse both clinical and serological data of patients with MS treated with alemtuzumab. It was found that autoimmune disease developed in 22.2% of those treated with a range of different systems affected."



And now, from the NMSS website, What Causes MS in Kids?:
Investigators nationwide are recruiting 640 children with early relapsing-remitting MS or CIS (clinically isolated syndrome, a single episode of MS-like symptoms) and 1280 children without MS or CIS for a four-year study to determine environmental and genetic risk factors that make children susceptible to developing MS. The study, funded by the National Institutes of Health, leverages the National MS Society’s support of the Promise:2010 Pediatric Network of Centers of Excellence.
Background: This study takes advantage of the collaborative efforts of the Pediatric Network. Although the initial grants end this year, there is funding through 2012 to support a data coordination and analysis center so the Network can continue to collect data and study pediatric MS and related disorders. The Network produced over 150 papers, posters and presentations on pediatric MS and network members are the lead authors and editors of a textbook on Pediatric MS from Cambridge Press.
The five-year, $3.2 million grant to lead investigator Dr. Emmanuelle Waubant (University of California, San Francisco Pediatric MS Center) from the NIH is based on pilot data collected by the Network in a study of 180 children with MS. That study confirmed previous reports that the Epstein-Barr virus (which causes infectious mononucleosis and other disorders) was associated with higher risk of MS. They also reported that cytomegalovirus was associated with a lower risk of developing MS, and that herpes simplex virus type 1was associated with increased risk in children who did not have a specific immune-related gene. (Neurology 2011;76:1989–1995)
These findings and other factors are being investigated further in the new study, which should help us understand more about how MS begins in children and can eventually be applied to adult forms of MS. Read more about what triggers MS.
The Study: Those under age 18 who had disease onset (MS or CIS) in the last two years may enroll in this study with the consent of their parents. Children without MS or CIS can enroll if they are 19 or younger and don’t have a demyelinating disease or an autoimmune disorder (except asthma).
Participants are providing blood samples to test for genetic and environmental risk factors that may be associated with pediatric MS. Next, all participants are completing questionnaires about relevant environmental factors. Investigators also will draw information from participants’ medical records.
Investigators specifically are looking at genes, Epstein Barr and other common viruses, vitamin D levels, and exposure to cigarette smoking. They are attempting to confirm these risk factors separately and to determine whether there are any interactions between them.
It would be great to have more answers!

Tuesday, July 19, 2011

A Little Bit of Everything

Check out the NMSS blog

Then, read about the latest on Jabecca Walk  (See also Getting Involved and an MS Competition)

And now, an update on me; I know I don't talk about myself very often on here but it is mostly because I haven't really had anything MS-related to report.  I have been doing very well lately, which has been great!  The weather in the Midwest has been consistently in the triple digits, so I keep waiting for the heat to affect me as it did last summer.  So far, however, the heat has not bothered me!  Part of that may be because I am not going out into the heat quite as much since I know it could become an issue and I am careful not to "overdo" things when I do go out into the heat for longer periods of time.  Despite my conscious efforts, I still believe that something is working for me (Copaxone, vitamins, or a combination of everything) and I am very excited about that.  Except for taking my shot everyday and the bracelets on my arm that remind me, I really haven't noticed that I even have MS lately.  THAT is a great thing!  I am hoping that this keeps up, but am continually waiting for the floor to drop out beneath me.  I will keep you posted, but know that if I am not posting about my "condition," it is because I am doing well!

In research news, the latest MSIF mailer I received reported that a recent study "examined the relationship between self-reported relapses and levels of sports activity in 632 patients with MS. The study showed no association between sports activity and clinical relapses."

 MSAA has produced a new publication, Solutions for Wellness.  It can be viewed by clicking here.

 That is all I have for today; stay well!


Wednesday, March 16, 2011

MS Incidence Rate on the Rise?

This week's mailer from the MS International Federation had a report entitled "Increasing frequency of multiple sclerosis in Catania, Sicily: a 30-year survey."  The report stated that (regarding Catania's MS incidence rate), "Overall the authors found that during the last 30 years the incidence of MS in this population increased from 1.3/100,000 during the first 5 years of the study (1975-9) to 7.0/100,000 during the final 5 years (2000-4), suggesting that the incidence of MS is still rising and supporting data from elsewhere."

My question is this: Is the MS incidence rate truly on the rise or are technological advancements simply allowing for more MS diagnoses? 

In 1975, the year this study began, I would argue that less people were diagnosed with MS because technology was not good enough to accurately diagnose a person with MS, except in the most obvious cases.  As we know, MS is generally diagnosed after ruling out all other possible diagnoses.  Maybe in 1975, doctors were just unable to accurately diagnose MS in the way that they can today.  MRI technology has gotten better - allowing us to see more of the brain.  Also, I would argue that MS is better understood today than in 1975, which probably leads to more diagnoses. (clearly, there is still plenty that we are still learning about MS, but certainly we know more now than in prior years).  In addition, some people may have ignored initial symptoms and waited years before going to the doctor and getting a diagnosis.  Maybe people are just more apt to go to the doctor earlier on.  It seems as though there could be a number of possibilities.  

In conclusion, I really don't know how we can be sure that the incidence rate is rising.  Clearly, the number of people diagnosed with MS is rising, but does that truly mean that the incidence rate is on the rise?