MS News That Caught My Eye Last Week: Economic Impact Survey, Fatigue, DMTs
National MS Society Launches Survey to Assess Economic Impact of MS
We know that managing MS is expensive. It can cost us money out of our pockets and also limit our ability to earn that money. A small survey about this was the subject of my “MS Wire” column last Friday. Coincidentally, the National Multiple Sclerosis Society is conducting its own online survey about this. The results, I’m afraid, will paint a stark picture of our economic health as people with MS. Hurry if you want to participate in the survey, as the deadline is Sept. 24, only a few days from now!
The National Multiple Sclerosis Society, together with the Lewin Group, has launched a survey to assess the economic impact multiple sclerosis (MS) has on patients and their families.
In the survey, which can be found here, MS patients and/or their family members are asked to answer up to 32 questions detailing their health-related expenses, including those associated with medical insurance, treatments, and doctor visits.
Click here to read the full story.
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#MSVirtual2020 – Fatigue Tops Survey About Relapsing MS Symptoms
Here’s another survey, and the results should be obvious to anyone with MS. It found that fatigue affects our daily life more than any other symptom and is triggered mostly by heat, stress, and lack of sleep. Gee, ya think?
Fatigue is the most impactful symptom on daily functioning in people with relapsing forms of multiple sclerosis (MS) and is more severe in patients with relapse, pain, depression, and sleep disorders, according to a U.S.-based survey.
The results were based mostly on a new MS-specific tool called the Fatigue Symptoms and Impacts Questionnaire-Relapsing Multiple Sclerosis (FSIQ-RMS), supporting its use to further understand and manage this debilitating symptom.
Click here to read the full story.
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#MSVirtual2020 – Long DMT Exposure May Delay Disability Progression, Wheelchair Use
I’ve been treated with disease-modifying therapies (DMTs), including Avonex, Tysabri, Aubagio, and Lemtrada, since Avonex first became available in 1996. I can’t say I’d be in a wheelchair without having these treatments, but I also don’t know that I wouldn’t. This study helps to confirm my belief that DMTs were the right way to go, at least for me.
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Comments
Jane Blunt
I follow with much personal interest, studies relating to DMT treatment. I am on the cusp of being diagnosed with MS. With a "likely" diagnosis from the neurologist and referral to an MS specialist. During a two month attack I spent my time researching this scary disease. Some report literally years and years to a diagnosis thus delaying treatment. I find that incomprehensible. I am a new MS victim. Hopefully my story will be different. Educating oneself is the way to go. To be able to ask the prudent questions with knowledge. My aim is to keep my mobility. Hence I am keen to understand DMT. The side effects of which seem largely neglected and unreported alongside promising studies and data? Is this a separate study? I'm confused. JB
Ed Tobias
Hi Jane,
MS can be a very confusing disease. It's difficult to diagnose as its symptoms are similar to a number of other illnesses. It also treats people differently. Many go for years with very few symptoms an are limited very little, some of them without being treated with a DMT. A few, on the other hand, develop serious symptoms quickly.
I've lived with MS for 40 years. There were no DMTs when I was diagnose. There are now more than 20 of them available with more in the pipeline. Each has its own level of efficacy and potential for serious side effects. It's a risk/benefits analysis that you and your neuro will need to make, taking into consideration your current level of illness, your lifestyle an your ability to afford which might be a large out-of-pocket expense, depending on the treatment you decide to use.
It sounds as if you're heading into this journey the right way. I've written a lot about DMTs, and lot of other things, in my MS Wire column. If you search this website for it I think many of your questions may be answered.
Good luck,
Ed