A friend recently asked me, “What is Multiple Sclerosis?” I was honored that she wanted to know. I hope this helps.
This graphic basically explains the nature of how Multiple Sclerosis works. I don’t expound on this because there are numerous sites that do, but I can explain how it effects me. Before I go any further I just want to remind family and friends that although there is no cure for M.S., it is agreed upon that it is a disease of the brain and spinal cord. Although, this time honored theory is presently under fire! But for now just know that M.S. patients experience problems based on the location of these plaques or lesions. This is why everyone experiences MS differently. In fact you can have lesions on parts of the brain that you don’t use.
Above is an MRI scan, basically a picture of a brain. You can see the one on the left has no white spots (lesions) and the one on the right does have lesions. And that my dear is the culprit of Multiple Sclerosis! I don’t know when they came, but the bloody bastards appeared and slowly began to not only alter the physical geography of my brain, but also my life as well. It took me a while but I’m starting to appreciate how it affects my family and my husband. Since I have MS, my husband, mom, dad, and sister do too! In fact we all have to deal with my MS the best way we know how. It’s been a long time yet, I know I am still learning!
The doctors are quick to tell you about physical aspects of the disease. To name a few: fatigue, tingling, numbness, loss of balance, weakness, and blurred vision, but I felt less prepared to deal with the emotional roller coaster I would soon be on. Sometimes disability bring on denial, depression and dependence on others. Defense mechanisms can be cruel and insidious. Denial can masquerade as your best friend, but can be the very thing that causes a complete meltdown! It serves to separate me from what is.
The brain on the right has about 7 or 8 lesions. As I have said before the doctor told me I had “too-many-to-count”!!! I’ve told you that this illness is nibbling away at my idenity as I once knew it. When I’m at my lowest state of mind, I declare I am but a scaffold of what I use to be. But another blogger has challenged me to build a new life, a new identity, a new structure if you will, on the skeleton that I have now.
I can pursue my desires within the context of my limitations. I still think this is a horrible despicable disease that strikes those we love. But now I can finally have time to take a Spanish class. I can pursue my bliss. I can spend time with my family. I have a definitive boundary between what I can and cannot do, and that infuriates me! I haven’t made it to acceptance, but at this point, I just may be headed in the right direction.
I am afraid. I was just told more than they can count. Stopping at 32 lesions. Ordered more tests. 2 more MRIS and a spinal tap and a eye exam and bloodwork. What the hell happened to me . driving to work and everything went blurry. Where will this stop
Nicole, thanks for sharing your MS experiences.
Danielle
Thanks for reading them
Nicole, Thank you this site is as wonderful as you are I am sure.
Bless you for using your GIFT and sharing this with others,
In Love~
Stephanie, No,thank you for reading!
Nicole
I truly understand what your going through. I was dx : 11/2010 ,I had symptoms of dizziness, migranes , and blurred vision . When the dr looked at my MRI , she said I had over 20 + lesions and she couldn’t believe I could walk in her office without assistance from a walker or wheelchair. I had Mri ‘s since then ,and no new lesions or active lesions since I had been on Tysabri . But I recently stopped Tysabri because of being positive for the JC virus . So now I’m waiting for 3 months so I can use another med. I wish I could wait and give myself a break but that wouldn’t be wise to do considering all the lesions I had .
Angie, Yeah, I’m JC+ too.
Nicole
hi honey…i love this, and i was only getting PART of your stuff, so this is great. my first mri looked like starry starry night, my second mri looked the same-ish, this has been since 2005, and now the docs, are wondering if i have MS, what the hey!! the nasty little doc in seattle, will not consult w/me on the phone, and none of my local VA docs, are really sure what is going on. sorry, gettin’ all worked up. I finally left the ball in her court, by asking if i should quit the copaxone, that she was so quick to point out costs alot of money. she made me feel like i was not worth it. ok, i made me feel that way, but she sure as hell did not help, when she said”you may not have ms” and i said “crap”, itr was because i was back to square one. and she said”oh, you WANT to have ms.” what a beech, and she is “cutting edge” in seattle area? i think they are referrring to her bedside manner! DR. Milliken, fyi. thanks for your friendship, Nicole, i think you are very talented and fun.
Leslie, That sounds very nerve wrecking! Thanks for the nice comment.
Nicole
Leslie, I’ve read something like a quarter of people with MS will never have a second flare even if they do/take nothing. I know at Hopkins, they call a patient “Probable MS” until they have a second flare. I know there are many who hate the designation because they want to “know” what they have. I understand the power of naming our maladies. It links us in with all who have gone before and are currently going through the same thing. Just be aware the only way to “know” is to have another flare, and everyone I’ve talked to with MS says each flare takes some thing forever whether it’s a little memory or the ability to walk without a limp. Every flare seems to come and take a souvenir. In addition, it is possible to get long term care insurance for far cheaper if you don’t have the diagnosis of MS so there are things to take care of while the condition lacks the title if possible.
And … the research NOW seems to think if one has a
“clinically isolated symptom” and the patient is able to start
disease modifying meds (DMDs) promptly … one may not
ever see the disease progress into full MS.
Hmm!
Just a thought – from a gal dx w/PPMS in 2006 who has NEVER had a flare in her life!
Caitlin
Yeah, at the time of diagnosis, I had a good dozen and a half on my brain and at least 4 more on my spine. Yet still, I have thus far been luky on the symptom front (eagerly searching for wood other than my head to knock). I mean I have pains, but few which keep me from living my same life, and I can still think even if my wife would point out all of the things i regularly forget. I think I was always a pain to live with so I can’t pin that one on MS. Yes, I’ve been very lucky. My friend in NM who has MS and I always end our phone calls with each of us thinking “I am so lucky. My MS could have given me his symptoms.” For me, I have thus far, just gotten symptoms my life had prepared me to handle. Nicole, yes, I read your Walls post. I liked it and had to comment on it as well. I’d say MS made me talk a lot ,but that runs in the family. My grandma has a tape of me at 5, and I never shut up. The amazing part is she didn’t talk much in the tape, and everyone who knew her will tell you 5 min without talking must have hurt her something terrible. Diarehia of the mouth…a family tradition.
NM! Hooray! Weather is lovely here in ABQ for those of us living with MS. And when it’s hot? one doc recommended slushees … I say, frozen margaritas work better!
Dave Bexfield is our hero here in NM … http://www.activemsers.org
Having incredible experience post stem cell therapy!
HOPE!
my son is 32 and has prm , he also has nystaymus , its hard on me because it seems like he has given up he moved out on his own ,not a good decission because he is get used by people tha don;t care about him taking his money not doing the right thing and i just don’t no what to do anymore, i am so tried fighting with him to live, we just went to the dr and there is just to many to count , and now he dont even want to keep is appointments for dr vists anymore , don’t know what to do, this is so hard on me as a mother and reading your story just brings joy to my heart, keep doing what u are doing it is great love ya girl, we are from new iberia
Myra, my heart goes out to you. Just love him. That’s what my mom does, even when I really don’t deserve it. MS or not.
Nicole
My brain sparkles! The report that came with my MRI just said there are innumerable lesions. Did I say sparkles? My symptoms are pretty banal compared to many folks, which is why I’ve wondered if the number of lesions have anything to do with symptoms. Doesn’t seem to, since I’m still walking, and even riding my Harley when it isn’t too hot out. That leaves location. I haven’t seen my MRI in a while, but it seemed that I had them everywhere. As for symtoms, the entire right side of my body was compromised from late December to February, with me regaining all of my strength by this summer. Was that the lesions, the Avonex, physical therapy, strength of will, or a combination? Who knows?
Lisa,
i’m so happy lesion load doesn’t seem to correlate for you! It probably doesn’t correlate for me too. I can no longer do a lot, but learning take new paths, like Geof just mentioned.
Nicole
Nicole,
What I like to do before your doc enters the room, is take a pencil and fill in the white spots on the chart!
Great write-up as usual. Keep it up.
My Odd Sock,
Thanks for coming back!
Nicole
I call mine “the white shadow.” Keep at it, woman!
Corey,
I like that. “The white shadow” …nice.
Nicole
Hi Nicole, i added u without knowing you but the smile in ur face make me feel positive, after i start searching in facebook about this disease and trying to see if there is any info about it i found some pages and thin came to see ur page and start browsing thin i saw ur picture i was like really searching for somebody can help me go throw this bad times. thank u for ur positive attitude and the smile 🙂
Eaten,
You make me smile!
Nicole
Those damn lesion bastards oh I hate them so. I was just diagnosed last year and the first time I saw my brain scan it was like WTF how did they get there and how do I get rid of them. Well you kinda know the answer to that one. Then started the ‘ now what’? I remember sitting with my neurologist and she started talking and handing me treatment option information and the more she talked the more she sounded like the teacher on a Charlie Brown episode. Just hope the next time the brain scan wont be like a connect the dot coloring book but either way I refuse to let it get me (too) down.
Michael,
I think the coloring book probably wouldn’t go well!!!
I try not to let it get me down too.
Here’s what I tell myself about those lesions. As far as I know, no direct correlation has been found between specific lesions and specific neurological deficits. And while no lesions is probably better than one or more, I’ll keep believing that there is enough wiggle room in the “science of myeling interpretation” to keep me focused on doing well, despite the state of my lesions.
Judy,
You are so right. I just fell off the path momentarily. If I remember correctly, you got me back on track the last time steered off!
Nicole
I’ve seen the attempts to link lesion locations with symptoms, and i get the impression they are fairly correct. However there is a side of me which wonders if they are missing a timing element to the correlation. For a link to the best symptom to flare location(matches what I learned in college psych classes), this is still my favorite: http://www.patientslikeme.com/forum/ms/topics/16070
My speculation is the lesions are active attacks on a path on which our nerve signal travel, but often times the damage is continuing to mount after an attack (think water damage to the house even after roof is fixed). If I think of those paths like a city highway system, it is easier for me to understand why I can have a lesion but no symptoms. My signals just took a different road. In doing so, some of my signals, lacking an updated GPS for the nervous system’s highways, get lost completely or arrive at the wrong receptor. I use this model to explain why I feel my phone vibrate in the wrong leg and why I feel very little from my left foot. As for why we get new symptoms without “active” flares, I speculate the reason comes from how we define active flares and how our body deals with outages. Most of us pick a different route home when the roads are closed or greatly slowed due to traffic. I suspect our nervous system does too. I look at kids who have had half their brain removed, or patients suffering brain traumas. Often times the delay may be so small as to be unnoticeable. It’s only when we run out of back roads or are forced to use the delayed roads that we begin to care. That’s my theory for why the correlation is weak between location and symptoms.
However, maybe the road is closed so there is no more activity. The question then becomes have we pushed the signals down another path, and does this mean we could potentially lose more function with any further road closings? Will a small flare at a bottle neck point make us lose our alternate paths? Are we breaking our new paths by sending signals down them they were not meant to carry? How good are we at building new paths? I remember seeing a study when I was first diagnosed saying it took a patient who has had MS for 5 years more than 4 times as much brain activity than a healthy adult to simply make a fist. Is it a question of sending more signals because many never arrive? I know our vascular system makes alternate paths to get more blood to different parts of our body thought to not be getting enough blood. Can our nervous system do the same?
Geof, Wow. I think once again you may have given me an idea for a new post. Did you get to see the last one? I wrote it for the MS society’s blog. Thanks, If I were making money at this I think I would owe you something!
http://blog.nationalmssociety.org/2011/11/ms-walls.html
Nicole
Nicole, I believe you have progressed further in achieving your bliss than you realize. Your blog is an outlet for you, but is probably helping other people with MS and those who are simply trying to understand it. Your writing is sprinkled liberally with humor and insight. Despite the things you cannot do, it is obvious that you have a love of life that will not be stifled. Keep pursuing your desires and redefining your identity as you go. Keep on keepin’ on!
Ann,
That means so much coming from you! Thanks!
Nicole
Nicole – WOW!! What a fantastic writer you are. I hope you gets pleasure from your gift. Not many people can get across their message as eloquently as you just did. And I hope you gain satisfaction in knowing that your sharing has helped others. It’s helping me. I love connecting with other people who share this stupid disease. We cope and hope, but it’s much better when we do it together.
Congrats on your wonderful blog. I’m looking forward to following you, getting to know you and hopefully having you do some guest blogging on my very new – and not yet complete – site FUMSnow.com. And yes, that’s what it stands for! BTW, when I was first diagnosed, I started writing a song called “New Normal.” I never finished it, but you’ve inspired me to go back and have a look at it again. I’ll let you know how it turns out!!
FUMS –
Kathy
Kathy, Thanks a million. What a huge compliment! I hope to hear your song soon.
Nicole
Me too. Too many too count. Then the next MRI 7 years later – no change. Still too many to count.
Laurie,
Apparently, a high lesion load is more common than I thought.
Nicole