Staying Informed & Educated
I’ve had many people contact me via social media for suggestions on how they can stay up-to-date on the world of MS and be as educated as possible when it comes to what’s going on with medications, clinical trials, etc. While there are many different ways for people to stay educated and fully understand what’s going on in the research of multiple sclerosis, there are many different ways to do this.
What's legitimate and what's not?
While I know it’s hard to fully understand what is actually legitimate and what’s not, I figured I would help share my insight so that you can make sure that you are receiving the best information you can. I want to share insight that isn’t just opinion-based but backed by scientific findings.
Understanding where information is coming from
I think I have mentioned in the past that I have set up what is called “Google Alerts” for the term "multiple sclerosis." This is something that I use, and I receive daily updated e-mails about what is published online regarding multiple sclerosis. However, one thing to be careful of with this feature is to make sure that you are reading the articles that are backed by science, and not just by opinionated blogs. Obviously, the informative articles posted here on MultipleSclerosis.net are referenced and give information about where the information was found, but they can still be opinionated.
How to set up a Google Alert for MS
So, if you want to set up a “Google Alert” for multiple sclerosis, here is how to do that. If you go to the Google Alerts page and you are logged into Google, you will be able to add words, phrases, etc. to be notified about. For more info, click here.
Other resources I use to stay informed about MS
Now, when it comes to resources that I look up on my own, without using the Google Alerts, there are a few of them that I use. Some of them are:
Making sure articles are fact-based, not opinion-based
So, how do we figure out what is legit information and what is not? Well I can tell you that if you are reading something that doesn’t have information coming from a legitimate source, or it seems VERY opinionated, and may have resources/references… but even those references/resources seem sketchy, you are most likely reading something that doesn’t have much, if any, scientific research on the subject.
Understanding scientific terms in MS research
So what do all of those scientific terms mean that you read about in the MS news releases or press releases? Well, I’m going to try and give you a rundown of this. When we are also going through educational material, there are some words or abbreviations that are hard to really understand what they mean, unless you have learned more about the meanings over time. Here are some examples:
- BBB – Blood brain barrier: This is how the bacteria, etc. get through to our brain and central nervous system (CNS) and cause MS exacerbations. This is also how medications are made...well, it keeps the BBB in mind, because in most cases the medications need to get through the BBB in order to work
- CNS – Central nervous system: brain & spinal cord
- DMT – Disease-modifying therapy: Medications made to try and help slow the progression that multiple sclerosis causes.
- DMD – Disease-modifying drugs (same as above)
- LP – Lumbar puncture (aka spinal tap): This is a procedure where your neurologist or someone similar, administers the lumbar puncture in order to retain fluid from your CSF (see below).
- CSF – Cerebrospinal fluid
- PT – Physical therapy
- OT – Occupational therapy
- RX – Prescription medication
- PCP – Primary care physician
- HCP – Health care practitioner
- ON – Optic neuritis
- EDSS – Expanded disability status scale
- QOL – Quality of life
- DX – Diagnosis
- SX – Symptoms
- JCV (or JC Virus) – John Cunningham Virus: Very common virus in the U.S. This doesn’t have any impact on you if you are JC Virus positive, unless you are on a immunosuppressive medication, such as Tysabri.
I know that I just gave you a lot to understand, and sadly, that’s not all of the terminologies that are out there, but it’s some of the most commonly used, in my opinion anyway.
How do you feel before getting an MRI done?