Healthline just launched a video campaign for MS called “You’ve Got This” where individuals living with MS can record a short video to give hope and inspiration those recently diagnosed with MS.
You can visit the homepage and check out videos from the campaign here: http://www.healthline.com/health/multiple-sclerosis/youve-got-this
Healthline will be donating $10 for every submitted campaign to the National MS Society, so the more exposure the campaign gets, the more the videos Healthline will receive, and that is all the more Healthline can donate to MS research, support groups, treatment programs, and more.
Perhaps you could help spread the word about this by sharing the “You’ve Got This” information and link with friends and followers of your own blogs or include the campaign as a resource on your Facebook, Twitter, or other social media sites you use.
It has begun.
This is something I have been grappling with for months and months. Taking medication every day gives me an unsettled feeling. There are many reasons why I do not wish to become a daily pill-popper. The main reason is that I do not want to put chemicals into my body that have the potential to make my physical well-being become dependent on them. Make sense?
Baclofen. Baclofen is a muscle relaxer and anti-spasm medication. Everything I have read and learned from my pharmacist is that Baclofen has terrible withdrawal symptoms similar to Benzo withdrawal or alcohol withdrawal (neither of which I have ever experienced, but have witnessed in other people.) Additionally, I have been avoiding medication like this because I read that muscle relaxers make you feel a little hinkey in the head. My family owns multiple rehab centers so I am familiar with medication addiction. Maybe that’s why I am leary of taking anything.
So far, (so far being 36+ hours) the Baclofen has been amazing. I am tooting that horn even though I am not on board with the pill-popping train. It actually works. It has only been a couple of days and already I feel looser, barely any tension, and very few spasms in my legs and none in my shoulder blade. The Baclofen is supposed to be taken with my Gabapentin for maximum effectiveness. I tried that last night and this morning and I feel great. My head does not feel funny at all. I’m happy to report that this doesn’t seem to be a typical muscle-relaxer in that regard. My dosage is quite low at 20 mg per day. It seems that 80 mg is a high dose and somewhat typical for MS, Syringomyelia, and other spinal cord issues. I’m happy to stick with the 20 mg per day. It is working.
Whew. I have missed two seasons. For the last four months, I was working on putting together a health and fitness expo. I have had only one flare-up that lasted about eight weeks. Other than the normal deep spinal cord pain and muscle weakness, I have felt fantastic.
My spinal cord hurts deep inside with a sunburn feeling from the base of my skull to my lumbar spine. That is from the syrinx. It has been a constant pain for months. Possibly because I haven’t been swimming. Or using my Stairmaster regularly. BOOOO me! It was a birthday gift and aside from swimming and lifting (light) weights, the Stairmaster is my favorite exercise. Lifting weights is supposedly a no-no with the Syringomyelia. However, it is good for M.S. and other diseases in that family. Besides, it burns fat and keeps the skeleton and muscles in excellent shape. And after a few months of working and not taking care of myself… I need to get rid of some fat. Oh-my!
Between working my show and having some days of rest here and there, I did find time to enjoy this Southern California fall and winter weather.
That just about wraps up the busy year. I hope 2013 is a great year for everyone filled with an abundant amount of good health and joy. Get up and keep moving. Stay strong. Move that body or lose that body.
Here is the short version of my M.S. & Syrinx story. I’ll call it Part 1.
I had tingling, leg spasms, weak muscles, vertigo, and severe fatigue off and on for about 12 years or so. Probably other symptoms I can’t think of right now…OH, oh, like Costochondritis, blurry vision, creepy crawly skin, electric shock in my feet and torso, and some other stuff. I’m very active I never really followed-up with the symptoms on a serious level. I figured I had the flu every couple of months for about four to six weeks each bout.
What sent me to the doctor was this weird sunburn like feeling between my shoulder-blades that has just gotten to be completely unbearable over the last three months. I decided to go see my mother’s Alzheimer’s neurologist because he is the head of a department at a swanky hospital here in my city. (And you know, swanky must mean he is good, right? I jest 😉 ) I offer him my symptoms and straight away he said, “M.S. for sure is my thinking, but please have an MRI as a formality.” In the MRI results not only does he find M.S., he finds this Syrinx that extends from T1 down to my Lumbar area. The MS is a pain in the budinsky just by itself. The Syrinx is now completely inconvenient because it is so long and full/thick in most places, that it might actually be causing additional pain, numbness, and vertigo. And in addition to that I am told I can’t kayak, do a lot of strenuous yoga positions, or swim vigorously. What?? Holy mother of… I’ll be a fatty in no time.
A syrinx is a sack of fluid, a cyst rather, that in my case has resulted from either a trauma or meningitis or a tumor, and over the years I have continuously damaged my back to the point where the Syrinx has grown larger and longer inside the spinal cord. It will continue to grow and fill with fluid until there is no more room for it which supposedly may cause the loss of the use of my arms or legs possibly. That could require a risky surgery. Apparently doctors dissuade surgery until the patient is almost at that paralysis point. So I’m just hanging tight with M.S. and the Syrinx for now.
P.S. I am 41 years old. How long could it take to be close to immobile? Can’t they just pull some CSF from around the cord to relive some pressure? I had a lumbar puncture last week and that little amount of fluid drainage made me feel AMAZING for about one week. The sunburn feeling was gone. Now it is back.
I have only been on Gabapentin for three weeks and I have gained weight. Not sure how much weight, but a lot. A little, a lot. A dress I had worn three weeks ago wouldn’t even go past my shoulders yesterday. It must be water weight because it is all in my torso.
The Gabapentin stops spastic movements in the legs and stabbing, burning spinal cord pain caused by lesions. It is also used for people with Epilepsy so it is a multi-use pharmaceutical. Like every drug in America. HA!
The side effects I have felt since taking the Gabapentin are: fuzzy brain/thinking, not feeling very alert when driving, unfocused vision, (not blurry or doubled, but more just unable to focus on the person or thing I’m supposed to look at) lack of concentration, weight gain, and exhaustion.
NOTE: I have only been on 900 mg for 3 weeks and most of those side effects have subsided, except the weight gain. Hopefully that will level out. I sleep like a log at night and it is fantastic. I will not increase my dosage even if the doctor asks me to. At least not yet. I have noticed improvement in my spastic leg and pain quite a bit and about 50% in my spinal column. Due to the long Syrinx in my cord, I really do not want to increase the Gabapentin because who knows if it is helping anything other than the spastic leg. Why take the “normal” 1900 – 2100 mg per day. Who even says that is normal??
Good luck with your medication options.
Remember when things were that simple? You could hop on the trike and hit the open road? The breeze blowing through your short, not-yet-grown-in-hair? Yea… neither do I, but it feels good to look at the photos and pretend to remember when that may have been. It couldn’t have been too long ago because at some point the hair grows in and we’re able to dress up that gorgeous wind-blown hair.
And then something goes awry and we need to call in our friends to back us up and open that can of Whoop-ass we’ve had tucked away for years. We never knew we had that can of Whoop-ass. We maybe thought it was a can of left-over PlayDoh or the Hanging Monkeys game. But evidently we all have Whoop-ass in some form or another. Mine comes in the form of strength. Health and fitness. People who workout. Keep their bodies strong.
Now, wait a minute. I said bodies. Not mind. And I realize he wears his name of his shirt. That’s for his benefit. Not yours or mine.
So I called in a few reinforcements when the going got tough recently. For the first time in my life I realized that in this world of crazy, I, the sane one may very well be one the edge of insanity. BUT luckily, I was pulled back from the edge of crazy and found out it was just Multiple Sclerosis. Whew. What a relief. My mind is not nuts. My world is nuts on occasion. My mind is fine. It is simply the added bonus of mind-meld from Multiple Sclerosis that is making it seem like the crazy is encroaching upon me when in fact is is not at all.
Multiple Sclerosis. Multiple Sclerosis. Let me say it a few times. I have Multiple Sclerosis. There. It’s out of my system. Well, not out of my system, but out of my system if you will. I’m not a sickie. Not a complainer. Not lazy. Not a bummer. So this diagnosis explains a lot for me and my close family.
Working in the health & fitness quasi-entertainment industry has helped me manage the Multiple Sclerosis symptoms over the last decade which is why I only recently received the diagnosis. People like ^^^^^^^ Mikey are the ones who inspire people like me to exercise everyday. Okay, four, maybe five days a week. The point is, working with the people I work with have made it very easy to keep Multiple Sclerosis manageable. I admit that I have been in a drunken stupor four the last month since I received the diagnosis and have let some things slide on the responsibility scale. However, it is the people like ^^^^^^ Mikey in my life who said, “Get up, girl. Move that body. Vegetarian – not good enough. Time to be a vegan. Move that body. Move. That. Body. or Lose. That. Body.”
So here I am one month later and six doctor visits in, more testing to go due to an unexpected spinal cord issue that was found as well, but the MS symptoms are going to be manageable, I believe wholeheartedly, due to a healthy diet, consistent exercise, and the strength of the people in my life who make me strong.
My baby, who happens to be taller than I, is the first one to say get that Yoga mat out and let’s stretch it out while we watch Pretty Little Liars and the Mentalist. She rocks, people. She will rock MS right out of you too if you let her. My tall baby is the first person to help me out of a chair on the days my body can’t do it alone. She is the first person to grab swimsuits for the gym swim. She is a-w-e-s-o-m-e. And sane.
My lovey, who happens to have more longevity on this planet that I, is the first one to say let’s eat it raw, vegan! He is the best vegan cook on the planet. He is a shopper, chopper, chef, experimenter, supporter of anything new, he is truly amazing. He is so supportive. He is always looking for new ways to cook food, find new things to reduce inflammation in the body, try new recipes, and he eats whatever I try to prepare. That in and of itself is a sacrifice. He always says it was delicious. He is wonderful. And borderline sane, but not, but maybe he is.
So I’m opening a can of Whoop-ass on the Multiple Sclerosis.
Who would have thought that you go to the doctor to receive the diagnosis of Multiple Sclerosis only to hear the following:
“We do see that you have MS lesions. However, I see something even more mind-blowing. You have a Syrinx that goes from T2 all the way down to your Lumbar region. And I see two bright white spots here in the T3 and T4 region that I don’t like. They could be tumors. Maybe lesions, but they look like tumors. Your Syrinx is so thick and full right there it was hard to get a good picture. But they are an odd shape, indicative of a tumor, and not what we typically see in a lesion. Now, do you have any questions for me?”
Yes. What in the world is a Syrinx?
Apparently, a syrinx is caused by either a traumatic injury or you are born with it (if you are born with the condition, called a Chiari-Malformation, one usually knows about this at birth or early childhood !!!! and since I am 40-ish, I do think I would have caught on much earlier had this been the case. DUH) So the doctor looks at me and says, “What trauma did you sustain? Yours is very long. In fact, one of the longest I’ve seen which means the trauma happened a looooooong time ago.” Okay. Hmmm. Nothing. I’ve never had a trauma. No back injury aside from the normal tussle when I was a kid with my sister rolling around in our Barbie tent. He said, “Well, it was traumatic whatever the case. And that is neither here nor there because there is nothing you can do now except for BE CAREFUL. No activity that will cause it to get worse. No kayaking. No impact sports such as white water rafting (cancel that summer trip), no backpacking, no lifting weights at the gym. Actually, light weight is okay. Maybe 5 – 8 pounds.” Oh, my gosh. What?? Remember, I have Multiple Sclerosis too and muscle maintenance is very important. So this is a double edge sword, this diagnosis.
The tumors, I believe they are lesions. He is not so sure. But what does it matter if they are inside the spinal cord anyway? There is no option if they are tumors. I’m going with lesions for now.