What is MS?
MS is different for everybody. It’s a Snowflake Disease meaning no two people’s MS are the same. I find these expressions so cliche, so I’m going to defer to Wikipedia and The National MS Society.
Now, if you just clicked on either of those links, and you are like me, you are thinking Just. So. Many. Words! and maybe you’ll read over them later. There are just so many things that I plan to do ‘later.’
Jane’s VERY, VERY basic rundown of MS: OK, you may remember from science class that our brain has neurons and axons and there are cells and on and on (science was never my thing and the fact that I even know words like neurons and axons is pretty amazing). Anyway, the myelin is the fatty tissue that surrounds the axons and myelin provides them a safe way to allow information to travel amongst all of those neurons.
MS is an autoimmune disease, meaning the body is attacking itself. That sounds really terrible, which it is. Let me try to clear up the visual that you may have with the whole ‘body attacking itself.’ Personally, when I hear that statement, I get an Invasion of the Body Snatchers vibe. I’m pretty sure that everyone reading this has had a cold or the flu at some point in their lives. When we get sick, the body sends in the ‘fighters’ to combat the illness. I’m not even going to name the ‘fighters,’ because I’ll probably say the wrong thing and get myself into trouble. In your spare time, go ahead and Google things like: white blood cells, T-cells and B-cells. Anyway, those fighters are confused and rather than attacking an actual foreign invader (re: sickness), they are attacking the Central Nervous System(CNS). If you aren’t sure what the CNS is in charge of, it is in charge of EVERYTHING in our bodies! EV! ER! Y! THING!!!! Feel like you need to go to the bathroom? The CNS is transmitting that signal so you get that feeling. Reading this fabulous website? The CNS is telling your eyes to see and move. Everything! Now, back to the myelin. Those confused fighters decided that that the myelin is a good place to attack. Think of the myelin like you think of a power cord. The power cord protects the wiring so that the light, refrigerator, microwave, etc. will work. Like the cord, the myelin is protecting the inner workings so that the signal can safely travel and we can do things like think, write, go to the bathroom, walk etc. Well, those fighters attack that precious coating thus creating a scar (sclerae, which I believe is a Latin word, but you can gather where the word Sclerosis comes from).
Now the signal can’t get to where it needs to go correctly. This is a the problem! Depending on where the scars (aka lesions) are, depends on the types of symptoms that a person has. That brings us back to the whole Snowflake Disease thing. There are some more common symptoms, such as optic neuritis, balance difficulties, and numbness, to name a very few. Diagnosis is typically done with an MRI and/or the always enjoyable lumbar puncture (spinal tap). If you are one of the fortunate ones, like me, you have MS in your family and between the genetic factor, the visible lesions seen in the MRI and symptoms, it is a slam dunk!
You might be thinking to yourself ‘I know someone with MS and they don’t always walk like they’re drunk. They’re not always exhausted. They must be faking!’ Back to the power cord. You know that favorite lamp that was your grandmother’s and you just can’t part with it? You know how the plug doesn’t even look like the plugs of today and sometimes you even get a little shock or if you don’t position that cord just right it won’t work? Well, MS is the same way. Sometimes the info can travel on those scarred up myelin and sometimes they can actually reroute the signal so sometimes a person can walk a little better than other times and sometimes a person with MS isn’t quite as exhausted. A few sides to this last paragraph; if you think that someone is faking MS, then you are just an asshole! I will make every attempt to keep my cussing to a minimum, but there is just no other word! At some point I will post about ableism, but not now. Also, if you really want to use that lamp of your grandmother’s, just call your local electrician or take it to a lamp store and get that cord fixed. You’re going to burn the house down! For crying out loud!
As if all of this info hasn’t completely overwhelmed you, I will now tell you that there are different types of MS. They are Clinically Isolated Syndrome (CIS), Relapsing Remitting (RRMS), Secondary Progressive (SPMS) and Primary Progressive (PPMS). I’m not going to explain all of them. Look at the graphic or click the links.
There are about 12 treatments available for MS as of today. Back when I was diagnosed, there were three. When my uncle was diagnosed, those three were in the trial phase and I imagine that when my grandfather was diagnosed, the doctor just shrugged his shoulders and said that he had better get his affairs in order. Just for your information, my grandfather died one month short of his 89th birthday. He ate pretty clean, as in, fruits and vegetables and lived a fairly stress free life – after he divorced my grandmother, but I suppose that story is for a different day! He was in a wheelchair the last few years of his life, but hello! 89! It is enough to give me pause and really put a value on clean eating, exercise and a healthy lifestyle.
When I was first diagnosed, I did a daily injection of Copaxone. It has an efficacy(success) rate of 30%+/- in slowing the progression of the disease. Well, it quit working for me around year four. At the time, the new, hot drug was Tysabri. In order to be able to take this drug, you have to test negative for the JC virus. About 30% of everyone have the JC virus and it just lays dormant in our brains. However, certain immune suppressing drugs can trigger it and then you can get PML which is a big, long word and if it happens, then you die. Plain and simple. As it turned out, I had the old JC virus so no Tysabri for me! Fortunately, my doctor was (he’s since retired, WTAH!) the greatest and he had started a trial with Rituxan, which is primarily used for Rheumatoid Arthritis. It is an infusion every 6 months. I had great success on Rituxan. Around 2017, the FDA approved Ocrevus specifically for MS which, from what I understand, is pretty much the same thing as Rituxan. This does open the door for me to talk about things like Big Pharma and money, but I digress….Anyway, Ocrevus has a 60%+/- chance of slowing the progression of the disease. That’s the best available! It’s also an infusion once every 6 months and I haven’t had an attack or new lesions since starting with Rituxan and Ocrevus! That’s great, but those old lesions are still breaking down and I am definitely in a worse place than I was even three years ago. This is where I can talk about HSCT, which, in RRMS has an 85%+/- chance of HALTING the disease. I will talk about this on the HSCT page.
TL, DR – MS can affect everything! It isn’t fun and the drugs available can only slow its progression. Click on the links for more info.
This is your brain.
This is your brain on MS. Those white spots
are lesions and they are NOT supposed to be there!