Black Holes in my brain...or, do we actually know ANYTHING about MS at all?

The longer I have this disease, the more discouraging it becomes. Not so much because it's a stinky disease and has its hateful bits, but because the more I look at the research, the more I realize we actually have no idea at all about what goes on with it, despite years and years of research.
I just finished reading this report (http://brain.oxfordjournals.org/content/126/8/1782.long)
about the black holes (so termed) that form in our brains over time. I had thought I was told they were permanent, visions of brain death and atrophy.
However, this study talks of how they can revert. Huh? And of course there is no association between the number of them and disease progression except in that overall brain atrophy is linked with physical and cognitive decline. At least I think that is what I understood, given that my brain doesn't seem to be functioning so well today. It's squinting, trying to focus. Brain squinting is an odd sensation. I used to be a hyper-intelligent mega-being with delusions of grandeur. Now I'm just deluded.
So, to summarize what I know about MS:
1. the disease modifying drugs we all take every day don't actually prevent progression of disease, they just modify how it presents itself - i.e. fewer acute attacks - but still the disease goes on ever on in our nervous systems. The drug companies want to tell us they delay progression, but I'm not seeing it in the research. So, after years of injecting myself with this drug, I have absolutely no proof that it's doing anything for me except bettering my injection skills and helping me learn how to needle felt.
2. Cognitive changes and mood changes are very poorly understood and rarely dealt with, as is pain. So we wander about, foggy and groaning until someone takes pity on us and feeds us chocolate.
3. What used to be an indicator, number of brain lesions, is apparently totally unconnected to disease activity and it is really the silent inflammation that causes the problems. Of some part of the brain as yet uncertain. Maybe glial cells. Maybe that bubble gum I inhaled as a child. Who knows.
4. We have no idea what causes the inflammation, what makes it worse, what makes it better, or what causes it to start in the first place.
5. The only way to treat the disease is symptomatically with ever more intrusive treatments, appliances, care, limitations. The thought of a scooter was cool when I didn't see it lurking around the corner. Let's not talk about Depends, shall we, until Victoria's secret makes some?
6. We used to think that MS was unknown in people who get a lot of sun, but now we are finding fresh cases that have had MS for years and who have only just moved north from the equator. So maybe the Vitamin D thing isn't right, either.
7. Practically EVERYONE gets Epstein-Barr virus at some point  (though it's one of those things that is implicated in many diseases) so why do some get this, some get non-Hodgkins lymphoma, etc? Is there an infectious cause? Who knows?
8. CCSVI's hypothesis isn't proven, but some people get benefit from having their veins plunged. No one knows why. No one knows why not. Everyone knows stents are dangerous, but people are still getting them. There is no logic in this disease anywhere, except the logic of the market.
9. Completely killing your bone marrow and starting fresh with a new lot of cells seems to help - but for how long? No one knows.
10. Apparently zapping your brain deep inside can help with cognitive problems, but it also helps with depression, which can lead to cognitive problems. Chicken and egg, people. It's always chicken and egg.
11. The only certain thing, MAYBE, is that we are losing myelination of our nerves. But are we really? Since most of the research is done on mice and cadavers, I'm not so sure even that is true, and as I'm still alive, and not a rodent, I'll never know til too late.

Is it any wonder we get depressed?
Ach, the hell with it. It's obviously time to stop looking at the research. It makes my brain ache, and I know that can't be good.

medication tango

Being a "patient with MS" means being a patient on a cocktail of drugs, most of the time. They pitch and yaw you, spinning you between spasm and lethargy, dizziness and balance, drowsiness and energy. It's like walking a balance board with wobbly bits. There's temptation on that balance board, too. But you always pay.
Today, for example, I am totally stoned. Last night I took my usual medication to stop my legs kicking violently - it's a benzodiazapine and I've stayed on the same dose for a long time, for which I am proud, as these drugs are addictive, habit-forming, and require, usually, a regular upping for effect. I might, in fact, need to up mine as I wake so often at night, but I'm fighting that fiercely.
And last night I took a full pill for my leg spasms - baclofen - the mystical drug that has put so many people into wheelchairs. See, the same controls that make your legs spasm painfully are also the ones that make them able to hold you up. Usually I take a half pill. I didn't last night, wanting to try to sleep an entire night for a change.
So today I can barely see outta my eyeballs. I am too tired to drink my coffee. Taking the dog for his morning walk was like a trip in my head - I have little remembrance of the event, not of the temperature of the day or the smells of the air or anything. I finished my shower without noticing the plug was in the tub so the water was up over my ankles. Fair enough, I can't feel my feet anyway, but I should have noticed the sloshing...
So, I'll have to adjust down again and deal with the hours of nightmares I have every night, probably caused by my waking in the midst of them. And be tired because of that. And have painful bum spasms when I walk. Tra la tra la!
Added to that, I've been taking big doses of Vitamin D, 4000 iu a day, and now I find out it seems to be tied to heart disease. So will have to adjust that as well.
Of course, my copaxone dose remains the same. Always. No matter what I weigh or how ill I am. This baffles me, and makes me doubt it's efficacy, especially since I don't seem to be holding steady in my disease.
But maybe it's all just drug reactions? Or interactions? Or something?
I hate having to learn new dance steps all the time.

Blaming and hating

There's so much anger out there about the CCSVI thing.  It makes me weary.  I mean, heck, we're a pretty unlucky gang, we MSers, and we should be standing together, rather than trying to decimate each other. It reminds me of the battles between stay at home mothers and working mothers, where both sides just hurl invective at each other (and men) without ever acknowledging the right things about the opposing side.

It's exhausting.

I find it most frustrating when the MS Society gets attacked.  These are the same people who get people wheelchairs if they need them, find walkers and canes if necessary, look into housing issues and legal issues ( or at least refer you to someone who can help) and yes, fund research. And yet all of a sudden they are the great satan and do nothing but evil. I can't agree with that viewpoint. In fact, it seems like ingratitude of the highest order.

I know our MS branch is working so very hard to raise the money needed for client services, ongoing classes, research, education and awareness. The small group of  staff are everywhere, totally dedicated, working many hours overtime to fill in for volunteers who couldn't make it, to help make events a success.  There are many many volunteers who help with their work, many of whom feel disenfranchised by the anger directed at the society. All in all, this hatefulness is not going to get us anywhere. Except maybe the MS Society won't be able to help those folks who really need their support. Do we want that?

Research is ongoing into CCSVI. Fortunately (I believe it is not going to be a cure-all), research is also ongoing in several other areas. This is a complex disease.  A study (http://www.eurekalert.org/pub_releases/2010-09/cp-isp091610.php) today reported that the immune attack on neurons doesn't just attack the myelin - it attacks the cells themselves and changes the calcium balance. It's preliminary, but it just adds to the messiness around this disease and the very real challenge in treating something that is so different for each person.

I wish we could concentrate on working positively instead of negatively.  I wish neurologists wouldn't be so rude about it all. I wish they were cuddlier overall. Mine does not fill me with love, I gotta tell you. So it's understandable that people might get a bit angry at the neurologists.  But hey - the neuros have their own problems.  MS patients are notoriously well-informed and somewhat demanding.  We can be a pain in the arse.
Maybe we need to just chill on both sides of this thing and admit we may both be wrong. Or right.

There's one thing I do know.  The MS society folks and the neuros aren't hoping to keep us sick forever. That's just paranoia. There's plenty of work to go around.

Now the drug companies?  Well, they love it when you have to take a medication forever. It's true. I'd love to force Teva to lower the price on Copaxone, which they've been ordered to do but have ignored up till now. I'd love it if we could all get off the statins everyone is being prescribed, or the antidepressants. I'd adore a national pharmacare program here in Canada. We have fill-ins, but they involve so much paperwork it's almost not worth the trouble. Almost. Except that I'm at $1800 a month for prescriptions alone (low estimate) and that could bankrupt a gal.

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.

THANK you, small furry rodents....

You've got to love the tiny research creatures that toil in labs and create the medications we people with MS need.  I've loved a few little hammies (and even a mouse or two) in my life, but I am gaining an even warmer feeling for the little varmints as I hear about their toils in MS treatment.
Tysabri, a relatively new disease modifying drug, has had great success in slowing progression with only that teensy little risk of brain infection - it comes from mouse cells called monoclonal antibodies.
Avonex, the interferon I was thinking I'd be switched to, is from the cute little fellows shown above - dwarf hamsters. I though it was more than appropriate given that I'd nursed a sweet sweet dwarf hamster for 3 plus years with my daughter - she developed a tumour and I kept it under control with my nursing skills...I thought it would be somewhat serendipitous if they helped me back now.
The Copaxone I'm on now is a chemical derivative, no rodents involved, although I'm sure they were involved in the research for its development.
Now I know a lot of you probably are worried about our little furry friends living out their lives in labs, but I've got to tell you, it isn't a bad life. You get fed, you get to reproduce like...ahem...mice, and though your life is short, it isn't appreciably shorter than a natural life, where, face it, you are food for the rest of the food chain. Death is quick and a lot less brutal than being chewed.
But every now and then it seems appropriate to say a quiet huzzah for these wee workhorses of the research industry. So three cheers, tiny four-footed ones!  Thanks for your endless service and wishes for lots of crunchy seeds and veggies and a good hot date.