Now this is SO cool. I've never been able to find much data on the whole overheating factor that I seem to feel so much with my MS. Just recently I was in a hot tub... I can't help it. I have to go in when I see one. Anyways, I seem to hit the over heat point before I really can interfere and get out of the heat, so then it's too late. This time, I got a tremor in my right hand that lasted for some time. It goes away eventually and then I feel weak and tired, but damn, I like hot tubs. Worth it right? Anyways...
This cool article is about putting us MS'ers in a body suit that heats up and then they track your eye movement to see what the impact of the heat is. COOL. I like this type of research.
"The UT Southwestern study, available online and appearing in the March 25 edition of the journal Neurology, demonstrated that as body temperature rises, the severity of an eye-movement disorder called INO, or internuclear ophthalmoparesis, also increases. When a person with INO looks rapidly from one object to another, one eye moves more slowly than the other. Normally, the eyes move at the same speed.
INO can serve as an easy-to-measure "canary in a coal mine," acting as a surrogate for other heat-related symptoms that are harder to measure, such as fatigue, mental confusion or bladder or bowel problems, said Dr. Elliot Frohman, professor of neurology and ophthalmology, director of the Multiple Sclerosis Program and Multiple Sclerosis Clinical Center at UT Southwestern and senior author of the study.
The researchers' tools were a whole-body suit, riddled with tubes for circulation of water, that can change body temperature; a pill-like thermometer that measures core body temperature after being swallowed; and an infrared camera that painlessly tracks eye movements.
The study, conducted at UT Southwestern, included eight patients with MS who have INO, eight with MS but not INO, and eight healthy control subjects. Warm water in the body garment raised each subject's normal temperature by one-half of a degree Celsius, and the cool water brought it down by one-half of a degree.
The subjects also wore a lightweight device, fitted on a headband, that used infrared light to track their eye movements as they followed a random sequence of blinking lights.
In the subjects with INO, increasing the body temperature worsened the differences between their two eyes' relative motion. Conversely, cooling the body made the eyes synchronize better.
Monitoring INO in a clinical setting could provide a sensitive test to determine a patient's susceptibility to other heat-related MS symptoms, as well as a way to monitor the effectiveness of treatments, Dr. Frohman said.
"With this new technique, we can objectively test new therapies that specifically treat a host of MS-related symptoms," said Dr. Frohman.
The next step in the research, Dr. Frohman said, is to use this system to measure the effectiveness of a drug that appears to relieve heat-induced symptoms in people with MS.
"We've shown that by this method we can model the principal mechanisms that cause certain symptoms to worsen in people with MS," he said.
About 3 more weeks
I talked to the MS clinic today and got my appointment for the Dermatologist. It's in 3 weeks which I'm pretty grateful for as my acne is out of control. I have a new patch just under one of my eyes now. I'm tired of it! I wonder what the connection coudl be to the drugs I'm on. Weird stuff. Less than two months left now in the trial though so we'll see what comes next!
Oh, and Happy Easter everyone. I was sick over the whole weekend with a head cold in the typical way I get it. Knocked me off my feet and I'm just starting to surface in time for month end at work. Thanks goodness I wasen't hosting a dinner this weekend! Thats what mom's are for right? :)
Nicely done Merck Serono. They've created a new formulation of Rebif that is producing less site reactions. The report sites that people will stop treatment from site reactions. Have you done this?
"In a recent two-year (96 week) Phase IIIb study, 260 patients with relapsing remitting multiple sclerosis treated with the new formulation experienced a near three-fold reduction in injection-site reactions. These results are compared with historical data for the previous formulation of Rebif (30.8% versus 85.8%)1.
"Rebif is an established first line disease modifying treatment for relapsing types of MS" said Professor Gavin Giovannoni from The Royal London Hospital. "Injection site reactions can lead to discontinuation of therapy in some patients2, the notable reduction in these reactions with Rebif New Formulation has positive implications for treatment tolerability and adherence."
Rebif has a favorable benefit-to-risk profile3 and has a proven efficacy and safety profile, which has been demonstrated consistently across numerous phase III clinical trials and clinical practice1,4-6. The new formulation has consistent efficacy compared with previous experience1. At 96 weeks, 53.3% of patients remained relapse-free and overall the expanded disability status scale (EDSS) score remained stable throughout the study1.
The New Formulation of Rebif is the first and only therapy for multiple sclerosis that is serum-free both from animal (foetal bovine serum) and human (human serum albumin) derived components in either the manufacturing process or as excipients.
The new formulation of Rebif® was approved on August 10, 2007, by the European Commission and will be phased in to replace Rebif® original formulation from 1st March 2008.
What better way to bring MS to the lime-light than to announce it in the media? I applaud Janice Dean for using her persona on TV to highlight our disease. I believe every little bit of attention it gets helps. From her blog:
Having said that, I also think it is important being a broadcaster to be able to use the bright lights, the microphone and the written word to communicate and lead by example. I find nowadays, there hasn't been enough of that. Media has (lately) been used to show the mean and sad side of the world today. The focus has shifted to celebrities-gone-wild, and their downward spiral to presidential candidates who will do or say anything to make themselves look better than their running mates. It's depressing, and maybe one of the things that has motivated me to do better. Luckily, some of us can still use those bright lights, a microphone and my laptop for a better purpose.
So here it is - no fancy lights or flashy graphics: I have Multiple Sclerosis.
I join about 400,000 Americans that are diagnosed with this strange and scary disease every year (the MS Society says a person is diagnosed once every hour). I have been pretty open around family and friends about this since I first became aware of it 2-1/2 years ago, but I was always a fearful to let anyone else in on my deep, dark secret. You can imagine why this might terrify me to go public because of the stigma it carries and the uncertainty of how this disease may affect me in the future. It was much easier just being called "Janice Dean the Weather Machine" instead of possibly "the lady that has MS."
But I'm fine with that now. Instead of remaining silent, I would like to be a voice for those who don't have one. Maybe even give someone hope that they too can have this disease and still fulfill their dreams.
Raising money for the MS Society of Canada!
If anyone can join me in raising as much money for research for MS please do! Any little bit helps!
My fundraising page can be found here!
This year I am trying to raise $5000.00 and I'll be doing the 5km walk! Perhaps Fingolimod/Avonex is doing something as my numbness has been very mild these days :) Let's hope that continues!
The walk is on April 27th, 2008 in the tri-cities area. If you'd like to join Team Mandatory Rest Period, I'd also love to have you! You can sign up for my team and do the walk anywhere in Canada.