I first want to say thank you! The amount of outpouring support I have received has me at a loss for words, I feel the love and appreciate you all! From all the calls, texts, direct messages, and e-mails I have received, it makes this so rewarding knowing that I have a lot of you that are riding along with me.
My main hope in doing this blog is to provide a look at what it is like living with Multiple Sclerosis, to raise awareness, and to provide a platform for those diagnosed with MS. You may eventually read some guest blogs from friends I have made along my journey, as we all have a story to tell. I do not know how often I will post a blog, as I need to be mindful of not overdoing it and making sure I am conserving my already limited energy.
You will probably read this many times, but MS looks different on everyone and affects us all differently. For example, some people who have had MS for 30+ years, they are still able to live an active lifestyle, work fulltime, and run marathons, while someone who has had MS for 6 months is fully bed ridden, unable to feed themselves, and not able to talk. That’s a drastic comparison, but it’s the reality of this disease. That’s why they call this the snowflake disease, no two people are the same. Trying to compare two people with MS is exactly what not to do. Although, those of us with MS can definitely relate with each other, we may have similar symptoms, but they’re never 100% exactly the same.
Many of you reached out and wanted to learn more about Multiple Sclerosis (MS) and what it all entails, so I’m going to try my hand at explaining what MS is and what it does. Just so we are clear, I am not a doctor and can’t give medical advice, but I will try my very best at explaining what MS is in layman’s terms. When I was first diagnosed, many different examples were thrown at me, it seems like most neurologists have a different way of explaining what MS is.
I personally like the electrical wire analogy. Lets take a second and imagine our bodies have millions of electrical wires (which are our nerves). Each electrical wire has a plastic coating on the outside of the copper wire (called the myelin sheath). Well, with MS, our own central nervous system is attacking itself and the coating around the wires. It’s exposing the wire and/or eating entirely through the wire, and now we have a broken connection. When you have a broken electrical wire what happens? The light doesn’t turn on or the outlet doesn’t work. With MS, when we have a broken connection or frayed wires, we will experience all sorts of issues from head to toe.
I will say this, most people you talk to with MS will have a laundry list of symptoms and areas that are affected. (Below is a graphic of the different areas MS can affect).
Unfortunately, something causes our immune system to attack the central nervous system, which consists of the brain, the optic nerves and the spinal cord. They do not have a cure or a way to turn it off, however, they have come very far with medications to slow down the amount of attacks we have and/or halt the disease progression. When I was first diagnosed they only had daily injections, and I was not about giving myself a shot everyday, so I didn’t get on anything right away, I wish I would have rethought my decision…
Dr. Aaron Boster is a well-known and well-respected MS neurologist at The Boster Center for Multiple Sclerosis who does a wonderful job at explaining MS. I encourage you to watch this short video, as it is a great explanation of what MS is.
MS is not contagious, and no we don’t have a cure, yet. I have my own beliefs that my MS was caused by the one of many vaccines I received in the military and/or something I was exposed to overseas. We will never know, but the VA has a great program for veterans living with MS. As far as we know, MS is more common in the Veteran community compared to the general public, why is that, what were we exposed to? We may never know…
Currently, 1 million people in the US are living with MS, they still do not know what causes MS, but a recent study from Harvard has shown some promising findings. This study suggested that the Epstein-Barr virus may be the cause of Multiple Sclerosis.
Harvard researchers reported a study that provides the strongest evidence to date that the Epstein-Barr virus (EBV) is a trigger for multiple sclerosis… Continue Reading
We still have a lot of unanswered questions about MS, but scientists, researchers, doctors, and activists are working diligently to bring more light to this disease. The ultimate goal is that we are all able to live free of MS and be able to say “I used to have MS”, but until then, it’s pedal to the metal, and we must continue fighting until we find a cure.
3 thoughts on “What is Multiple Sclerosis?”
Great read my brother. Totally makes more sense to me now. I love you Bdubbs.
Much thanks Brandon for your MS blogs.
I also was diagnosed with MS back in 1995 . However like you I did nothing for approx 10 years ,I was so in denial . Back then they had no meds and they the doctors would have to produce meds from my own body ( called beta interferon) and then give myself shots.
In 2005 I had another episode and finally had a spinal tap done and it was confirmed MS.
I really appreciate what your doing and like jimmy says keep up the
Good effort, I think you nailed it as a guide for people who want to know more about what this entails. I’ve had MS for 28 (maybe 29 now, I have lost count which is probably a good thing!) Though I can’t say I no longer have it I am so thrilled that I finally moved to Lemtrada which is my fifth and hopefully final DMT. The sense of liberation to put the constant need for medication and being tied to a hospital(s) as a result of access to meds etc is hard to put into words.
It was a chat one weekend with Aaron Boster where he was instrumental in convincing me to start http://www.theMSguide.com The channel is also an attempt to give a greater voice to men, especially ones at the start of the journey like you. I’d be honoured if you’d join me to talk about your experiences as a newly diagnosed patient.
Please drop me a line at: email.theMSguide@gmail.com and we can work something out. I’d love to talk about the blog and your efforts to shine a light on this presently uncured disease. We are all grateful. Thank you.