This originally began as a series of emails to my Family & Friends updating them during the onset and then diagnosis of my disease (Multiple Sclerosis). I decided rather than continue to overflow their Inboxes I would move my "updates" to blog format. And so here we are!
I have included my original 4 emails (below)...you know, just in case someone stumbles across my blog and needs the exciting backstory of it all! But from here on out its all brand new...so read, share and enjoy!
Since so many people have asked me, "So what exactly is MS? Is it like, 'Jerry's Kids'? Or is it what Michael J. Fox has?" I have decided it would be a good opportunity to explain what this bizarre disease actually is (since I had no clue 4 weeks ago either!)
Multiple Sclerosis is still a big mystery and no one yet knows what exactly causes it, and of course that means there is no cure. It is often referred to as a "chronic, inflammatory, degenerative disease of the central nervous system". It is classified as an autoimmune disorder; however, there is also speculation that MS is triggered by an unidentified virus.
Let's break it down (with a little help from the great Lorna Moorhead):
The latest theory on MS is this: Your white cells (the warriors of your immune system) suddenly decide to stage a coup. They begin attacking the myelin, which is like the big wall protecting the kingdom (aka Your Brain!) Well, these rogue knights (white cells) make their way into the kingdom and begin to wreak havoc on the kingdom's workers (your nerves) and things go berserk.
Well the problem with all this is that the kingdom needs these workers to keep the kingdom running. When these workers (nerves) are injured or captured, the messages get distorted or completely changed. So when the King (brain) sends out a message about regulating food supplies (aka the stomach is full), the message gets confused. Instead, the worker thinks he's supposed to lay a fire in the kingdom's main hall to regulate heat supply and you suddenly feel as if your legs are on fire from the inside out.
For most people with my type of MS, which is called relapsing-remitting, the battle will end and all will be well in the land again. This period of peace and tranquility is called remission; however, when the argument picks up again and the knights again lay siege to the kingdom, you will experience a relapse (also known as an episode or exacerbation).
For all types of MS, the damage and ruin left behind by the rogue army in the brain and spinal cord is in the form of "many scars, or lesions" = hence the names Multiple Sclerosis. MS can cause a variety of symptoms, including changes in sensation (numbness and tingling are common), visual problems (double vision, anyone?), muscle weakness, depression, difficulties with coordination and speech, severe fatigue, cognitive impairment, problems with balance, overheating, and pain. One of the most frustrating things to doctors studying this disease is that it affects each patient so differently, depending on which signals are interrupted.
While I hope my explanation of MS was at least slightly entertaining, I also hope it was informative. I hope that you will all help me raise awareness about it. It is a very mysterious and unpredictable disease that changes its victims lives forever, and while we now have wonderful treatment drugs available, there still is no cure. I look forward to becoming an MS expert in my own way and raising awareness, along with $$$ towards research. But more on that later...for now, thanks for reading and thanks for being a part of my wonderful support system. Check back soon for more updates and info! XOXO