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, 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. 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… insight that isn’t just opinionated, but backed by scientific findings.
I think I have mentioned in the past that I have set up what is called “Google Alerts” for Multiple Sclerosis. This is something that I use, and 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, that have legit resources backing their information.
Obviously, the informative articles posted here on MultipleSclerosis.net are referenced and give the scientific information where they found their information, but it can still be opinionated.
So if you want to set up a “Google Alert” for Multiple Sclerosis, here is how to do that. If you go to Google Alerts page – and you are logged in for Google you will be able to add words, phrases, etc. to be notified on. For more info, click here.
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 the National MS Society, Multiple Sclerosis News Today, Multiple Sclerosis Association of America, Multiple Sclerosis Foundation & Multiple Sclerosis International Foundation, and at times MS Discovery Forum. (You can click on the words of each one and it will link you to the area) As many of you know, I volunteer for MSWorld.org – so we also find news information about Multiple Sclerosis and list them in our News Center, as well as out Weekly E-Newsletter.
Now if you haven’t seen the Research Area on MultipleSclerosis.net, that’s something to look at as well. Gives you a bit more information and understanding to what the scientific information is and what it means.
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.
So what do all of those scientific terms mean that you read about in the MS news releases, press releases, etc.? Well, I’m going to try and give you a run down of this.
Aubagio = teriflunomide
Avonex = interferon beta-1a
Betaseron = interferon beta-1b
Copaxone = glatiramer acetate
Extavia = interferon beta-1b
Gilenya = fingolimod
Lemtrada = alemtuzumab
Novantrone = mitoxantrone
Plegridy = peginterferon beta 1-a
Rebif = interferon beta-1b
Tecfidera = dimethyl fumarate (formerly BG12)
Tysabri = natalizumab
So there are the names of the DMT (Disease Modifying Therapies) for Multiple Sclerosis. You can find more information about these medications, how they are administrated and more, by clicking here.
So when we are also going through educational material, there are some terms, abbreviations, etc. that are hard to really understand what they mean, unless you have learned more about the meanings, etc. over time. Here are some examples:
- BBB – Blood Brain Barrier: This is how the bacteria, etc. get through to our brain and CNS that causes 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.
- CSF – Cerebrospinal Fluid
- PT – Physical Therapy
- OT – Occupational Therapy
- RX – Prescription Medication
- PCP – Primary Care Physician
- HCP – Health Care Practitioner
- N. – 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.
Being JCV positive, like myself, and being on Tysabri, can put you at risk for contracting PML (Progressive Multifocal Leukoencephalopathy). However, they now have a way to view your JCV Level (ELISA) that measures your antibody level, which can then determine your ‘risk’ for PML while being JCV positive, as well as taking Tysabri, or an immunosuppressant in general.
I know that I just gave you a lot to understand, and sadly that’s not all of the terminology that’s out there – but it’s some of the most common used, in my opinion anyways.
I’m going to end this article on that note, but I will most likely do a ‘part two’ for this, in the near future. But all that terminology can cause a bit of a brain pause, where it’s going, “holy crap, what is all of this”… (lol)
Take care everyone – I hope this information has helped you out in some way, to help stay informed, educated, and help in understanding what the medical information actually MEANS!