February 14, 2012

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.

February 10, 2012

OOH, me aching bum...

I'm beginning to hate my "trunk". You know, the place where you put the "junk".
It seems to be giving me a fair bit of trouble. Started with back of bum spasms when I walk. Not pleasant, but I got used to them. Then the front of my thighs started in on the game. Cool, I thought. At least I'm balanced.

Then my inner thighs. Now that was weird feeling. They kicked in at a meeting and I had to rub them secretly under the table which of course made it look like I was distracting myself in an impure manner (as George Carlin would say).
So I just pushed on them and tried to persuade them to let go. They still haven't. They won't let me put my legs together, so I sit like a 50 cent tramp. As my grandmother would probably say. Good thing I wear pants. Good thing they don't have holes in unusual places. Good thing I'm not working anymore.

Now we're going for nerve pain up and down the super secret place. It's hard to feel elegant when you are hissing through your teeth to avoid screaming. Hot needles. Long hot needles.

It's MOST annoying as otherwise I'm completely numb "down there". It seems unfair. Either give me it all or take it all, right? Half and half, when I only get the bad half is nasty.

Was bad enough yesterday to surf on serious drugs. Fortunately today the needles are only occasional. I'll be sitting, completely comfy, when one shoots up my unusual location.
I'm frightening the dog.