June 29, 2010

I want a new drug

I want a new drug, yes I do.
Huey Lewis and the News
I want a new drug
One that won't spill
One that don't cost too much
Or come in a pill

I want a new drug
One that won't go away
One that won't keep me up all night
One that won't make me sleep all day

One of the most awful things about MS is the endless piles of pills that are prescribed to you to manage the symptoms. They cost all sorts of money, they interact with each other, causing more symptoms, they rob one system to manage another.
I've fought the drug thing as much as possible and even resent taking the ones that are supposed to be managing my disease (the endlessly expensive Copaxone)
Lately, though, I've found a new drug, one that I had forgotten about.
My symptoms are relatively quiescent at the moment, so I'm doing the exercise thing, and I tell you, if you can force yourself past that 10-15 minute barrier and break out in a sweat, those endorphins are fabulous.  I could become an addict, easy. Today I was singing along as I gasped through 30 minutes on the elliptical trainer - at least until someone else came in. Sweating like anything, no glowing for this gal. It was wonderful, joyful, painful....;-)
I'm trying to be careful, keeping cool, trying to keep my fluids up - but once I start it is so hard to stop....
Love it.

June 28, 2010

Clinical Trial Testing New Multiple Sclerosis Treatment to Launch in Buffalo

Clinical Trial Testing New Multiple Sclerosis Treatment to Launch in Buffalo
Looks like a good study protocol. Hope it shows us something of help!

Myelin repairing itself - wahoo!

Protein Helps Mitigate the Effects of Multiple Sclerosis

As well as the marks of other conditions

June 8th, 2010, 12:42 GMT
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Image showing demyelinization damage on a nerve cell
Enlarge picture
A group of American investigators from the Washington University School of Medicine (WUSM) has recently developed a new approach to mitigating the devastating effects diseases like multiple sclerosis leave behind in the brain of patients. The science team says that a protein involved in building the cortex of children and infants could have its action hijacked, and then used to restore the mature brain to its former potential. The finding could have significant implications for a large number of people suffering from MS and other neurodegenerative conditions, the experts say.

The disease appears when myelin, the protective layer that ensures the insulation of nerve cells, is disrupted. This causes the electrical signals traveling between neurons to lose their intensity, and become scrambled. “In MS patients, myelin repair occurs inconsistently for reasons that aren't clear. Understanding the nature of that problem is a priority because when myelin isn't repaired, the chances that an MS flare-up will inflict lasting harm seem to increase,” explains WUSM associate professor of medicine and of neurobiology Robyn Klein, MD, PhD. The scientist is also the senior author of the new investigation, which is detailed in the latest online issue of the esteemed journal Proceedings of the National Academy of Sciences (PNAS).

The WUSM team conducted its recent study on a batch of unsuspecting lab mice, which were genetically modified to act as a model for multiple sclerosis. It was discovered that a protein known as CXCR is directly responsible for fixing the myelin sheet covering the neurons. The finding was made possible by the fact that the group did not use a standard MS model for the research. In past works, the actions the brain took in repairing itself were obscured by the response of the immune system. The problem was circumvented through the use of the drug cuprizone, which promotes the death of myelin-forming cells in the mouse brain.

The results were “a surprise, because the main thing CXCR4 has been known for is its role in forming the brain, not healing the brain. But we did know that injury increases the number of brain cells that make CXCR4, so it wasn't an unreasonable place to look,” Klein explains. “We do not yet know if this myelin repair pathway is somehow damaged or impaired in MS patients. But I like the idea of turning on something that the brain already knows how to make by itself, allowing it to heal itself with its own molecules,” the expert adds. The WUSM team is now about to begin a new set of investigations, in which they will look at this protein, its actions, and its potential for a new drug in deeper detail.

June 23, 2010

Oh the joys of being able to move!

I feel bipolar. On the days when my MS body won't cooperate, I am grouchy, depressed, hostile, unmotivated.
On the days when it works, the sun comes out and I spring about, filled with the energy of muscles screaming to break free.  For the last three days I've managed a 30-45 minute aerobic workout, loving every minute.  I even did the deadly Wii Active today (sure, just the easy low impact one, but still!), breaking into a sweat so prodigious I daren't be seen for at least a half hour or so til it all stops pouring out of me. I can feel my tummy getting tighter, and it fills me with joy. And my legs remain strong, my balance is good (until after the exercise, when I develop a listing to one side like a sailboat tacking upwind).  My lungs feel open and exercised and aerated, my brain is functioning better, it's all wonderful. And I feel less like smoting anyone who annoys me...
I get done with my workout and immediately start thinking of doing another, my mind and heart willing, my muscles and nerves ever so affirmatively NOT. But I try and work in a walk as well later in the day, just because I can, and there are all those days when I can't that my muscles have to make up for.
And then, at night, when I crawl into bed, the pain starts - the muscle spasms, the contractions, the hip flicks. I try not to whimper, but it hurts, damn it, especially when my back flips my legs and they are pooped from the day. Fortunately, I am usually so tired that I fall asleep before too much whimpering ensues, but I'd sure as heck like to know why the spasming starts when I am at rest.  And maybe how to forestall it. Maybe I'll find out when I see my neuro on Friday....
Meanwhile, I'm riding this active horse for as long as my body will let me.  It feels so GOOD! And I can't help but think, if I exercise now while I can, maybe I'll get a grip on all those other monsters that have come to live with me - overweight, diabetes, high blood pressure...of course, the main problem is that when I exercise, I get very very hungry....;-)

June 19, 2010

Help Mii!

Ah Mii.
Any of you who read this blog know I love my Wii Fit. It's perfect for we wobblies, as it helps balance us, and adjust its expectations day by day so we need not die from over exercise....

But I've got some issues.  First of all, I created my Mii, designing it short and round, only to get on the board and have it readjust me shorter and rounder.  It's harsh.

I got over that shock - after all, I'm still cute on the picture despite my poundage - but then came the weigh in....

The line flows upwards, the BMI is over in the red area, and my Mii shoves out its not insignificant tum and wiggles it while the program says "That's obese!"

Okay, okay, I get over that and even learn not to take the cracks about the balance test not being my strength to heart(it was a bad balance day) and not to cry at the days when my Wii fit age trots up near my real age...and sneer back at it when I haven't exercised for a day and it gives me grief...

Unfortunately, now I am trying to lose weight somewhat dramatically as have diagnosis of diabetes to add to the thrills of MS, and the scale part is important. But it varies extremely depending on where on my carpet I place it. One day it soared by 4.5 kilos!!!! I know water retention is one of those things we wimmen have to cope with, but migods - ten pounds of water?  Unlikely. I hoped.  I rearranged the board.

"Ooh" it cooed when I stepped on it. "Your weight has changed.  Continue?" I continued. I still ended up 3 lbs heavier than I'd been the previous day, but at least I didn't feel like I needed to lie down and die.

Now, though, I don't trust it. I test my weight at least three times during a session. I'm becoming obsessed. It tells me my weight will vary by kilos depending on time of day...it mocks me with its red line and tummy wriggling...it nags me to exercise exercise exercise to get that posture of mine better, alternately praising me for excellent posture and telling me I wobble (dang left ankle) and need to work on my core. It's like an inconsistent parent, giving conditional love.


June 13, 2010

So, how does one know? Work and MS...

I've fought hard, filled out many forms, suffered life-threatening papercuts, and taken on the role of a disabled, can't work person.
Always, in the back of my mind, despite blinding fatigue, pain, leg spasms, cog fog, etc., I've felt a bit of a fraud.  After all, I don't need a cane all the time. I'm not confused all the time. I don't sleep ALL the time (though it often feels that way). I've only had maybe three flare-ups in the past 6 months.
So I commit to volunteer things, needing a purpose.  And then I often can't do them thanks to the fatigue...
But would I be able to do them for pay? That's the question. Or would I swiftly descend into the mad state I was in before leaving work, where, exhausted and stressed from trying to cope, I became hyperemotional and inappropriate?
Of course, there were issues there.  One was an employee, a doctor, who abused me every day, verbally. He even sent his patients in to abuse me. The ones that survived his care.  He was a rotten doctor and a bitter man, and he made my head spin with all that he pulled.  I wanted to fire him. But who fires a doctor, when they are scarce? Add a stressful job and high expectations by myself and my boss, and life was pretty tense.
Could I survive a "regular" job? Could I even get a regular job, after being off for a year on LTD? Would I endanger my LTD by trying?
My head is spinning.
I can't help but think that some people manage to work on less brain power than I have on an average day, even with my MS. And the constant pain I have - well, it's been around for years. I'm used to it, and it's only occasionally it grabs me by the gut and makes me cry out. The fatigue?  Well, there ARE meds for that.
But MS is a progressive disease. I've already noticed that my legs are much more spastic than they were a year, two years ago. They cramp when I stretch 'em, and I don't like walking, though I wish I could. It scares me to head out when I know the return journey will likely be pain laden and torturous.
But should I live my life afraid of what may happen?  Or should I push through and devil take the hindmost?
I have a neuro appointment in 2 weeks to evaluate my latest MRI, which I hope will give some explanation as to the increasing spasms in my legs and numbness in my nethers. I'd like to say I may get some guidance there, but I dunno. Neurologists aren't the cuddly type, and will likely not have much to contribute.

June 11, 2010

my brain aches....

Just had phase two of my cognitive testing for a study being done here in Ottawa - it involved one testing session, a second two weeks later, and a third in three years. It's supposed to evaluate cognitive changes in MS over time.
In some ways it was reassuring - I can still add most numbers, can think of new ways to combine sets, can tap the space bar at a certain rate. I failed utterly at the "reorganize the discs on the pegs" task and realize I need more time in kindergarten and soon before my abilities to grasp spacial solutions leave me entirely.
Remembering words, numbers, story elements - tasking! I had to close my eyes and block out all other stimulation to focus.  Wonder if I could do this during meetings at work?
Of course, got home and my blood sugar was a mere 2.8, which might have accounted for some of my fogginess.
It's difficult tracing the effects of different chronic diseases, and also I am wondering about the effects of medications and the causation of various troubles in my body. Where does one disease begin or end?  Where do the medication side effects become enough to discontinue them? What causes what?
I am so confused, and it's not just from the testing....

Curious about how you'd do?  Try going to this test site -there's a quick little test you can do that gives you a bit of an idea about some of what I did. http://www.neurology.ufl.edu/memory/cognitivetest.shtml

June 9, 2010

Saving all your foodstamps and burning down the trailer park


Soy un perdedor
I'm a loser baby, so why don't you kill me?

Sometimes, with this little MS thing, you feel both like a loser, and angry enough to burn down trailer parks. 
I can't even begin to tell you how TIRED I am of being told I look fine, when I've managed to drag some sensible self out of me for an hour or so in a day.
I feel frustrated that I have to explain and explain and explain, even to those who know me.
I'm tired of trying to learn the lingo for being taken seriously by doctors and neurologists.  
I'm fed up with dealing with the probable side effects of medications that may not really be helping me after all, and if they are, well, it's not by much.

I imagine everyone with a chronic disease, especially if they are outwardly semi-vertical and smile, deals with this anger and frustration at not being heard. On the one hand, we're PISSED that we were given this wee challenge to mess up our lives - on the other hand we are FROTHING at the mouth about trying to explain it yet again to someone. Or excuse ourselves, or explain why we can't do something or whatever. Grrr.
Just saying....
Seriously, I don't feel like a loser, nor do I want anyone to kill me.  But there's something in that song that calls to me. Perhaps that's because when I talk to health care professionals, I feel like I should be singing it to them...
Whaddya think they'd say?