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.

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.

Wondering what to do...

I have to make a trip by plane to Ottawa. Here's the problem...do I take my cane, which is some help to me but which isn't a LOT of help to me, if you know what I mean - or do I take my bulky rollator, all shiny black four wheels of it? I can walk SO much better with it, but I probably won't be walking much and it's so bulky. On the other hand, in addition to MS I am having knee problems and there is a significant difference in pain if I use the rollator to walk.
Hmm. How much of a crip do I want to be?
I am lusting after a little collapsible 3 wheeled rollator but it's $100 I don't have at present. So....
Any advice, MSers?

MS as a lipid disease? Interesting concept...

from i09.com

Have we been looking at Multiple Sclerosis all wrong?

Multiple sclerosis is a confusing disease. Widely regarded as an autoimmune problem, it affects millions of sufferers, and we still don't have a complete grasp of what causes it. Part of this problem is due to the fact that every time we find something that seems to be a factor in how it works, that factor doesn't seem universal.

But now there's a new theory of MS that could lead to a radically different treatment for the disease.

Top image: Random 42 Medical Animation.

A new meta-analysis by Dr. Angélique Corthals proposes that much of the difficulty we have with understanding the causes of MS may be because we're wrong about its basic mechanism. In a publication in The Quarterly Review of Biology, she proposes that rather than an autoimmune disease like previously supposed, MS might in fact be a metabolic one with an immune component.

It's a bold assertion to be sure, and one without original data to back it up (at this point, anyway). With MS, the myelin which protects and insulated the nerve tissue on your brain and spinal cord swells, and then scars, leading to neuronal damage. Corthals' theory gives another framework to approach this damage, and one with links to a disease we do understand — atherosclerosis.

This is where things get a bit dense, so bear with me.

There are certain environmental and genetic factors which can impair PPARs (peroxisome proliferator-activated receptors), which is part of the system that controls the metabolism of fat as well as immune response. When it's running at partial power, the PPARs can't properly control the levels of LDL — the infamous bad cholesterol — which leads to a build up of an oxidized toxic derivative of LDL called oxLDL in the blood. Once these are in the system, Corthals believes the body is "primed" for MS, and it can be triggered by a number of causes, including Epstein-Barr Virus, which is linked to MS in its own right.

Once triggered, an immune system chain reaction starts. The body sends out macrophages to deal with a pathogen, but the macrophages incorrectly gorge themselves on oxLDL. This puts them in a "zombie state", where they don't die and can't empty their contents, instead just building up plaques which damage the myelin sheath, and cause the symptoms of MS.

Edited to clarify: At this point, the disease triggers the immune problems we know of as MS. The theory isn't discarding the immunological side of the disease, just citing metabolism as a root trigger, which leads to the problems of the immune response.

Said Corthals:

Eventually, the toxic macrophages are cleared, leading to the remission part of the RRMS (relapsing-remitting MS) cycle. But this detente holds only until the next trigger comes along. Dysfunction of the PPAR is further implicated in MS because it slows the repair mechanism of the central nervous system to a crawl, preventing the efficient renewal and synthesis of myelin.

It's a novel theory, and while Corthals is working on pulling together some empirical data to back it up, it does answer some of the issues with how MS manifests. The disease has been linked previously to low levels of vitamin D, and is on the uptick in recent decades. Low vitamin D and a diet high in both saturated fat and carbohydrates (which is likewise on the rise) both contribute to the impairment of PPARs.

The mechanism that Corthals suggests is also interesting because it's incredibly similar to that of atherosclerosis. Atherosclerosis is when PPAR failure causes plaque buildup and scarring in arteries, which is the equivalent to what's being described happening to myelin. Also interestingly, men are far more likely to have atherosclerosis and women to have MS, which Corthals suggests may be because of the different way sexes metabolize fats. In the paper, she recommends "multiple sclerosis should be thought of as a metabolic disease, the female equivalent of atherosclerosis, not as a disease of the immune system."

If the raw data bears out this theory, it would mean a radically different approach to the treatment of a major chronic disease. One based on lipid metabolism (and potentially diet) rather than targeting the immune system directly. If it holds up, it would be a major paradigm shift in the way MS is handled — but first we need to see if the data fits the theory.

For further reading, Corthals has been weighing in on this discussion, and if we're lucky, she may even pop up here.

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Interesting discussion on this blog as well...plus a link to the research article.
http://asknicola.blogspot.com/2011/12/huge-news-multiple-sclerosis-is.html

The daily-ness of it all... walking, walking , walking

I linger in bed as long as I can, after a night spent tossing and turning, where I turn on my radio without knowing it and then wake myself when the volume level changes suddenly. I spin and toss as my legs ache. Finally I know I have to get up because I have a dog whose bladder is no doubt at the point of rupture in the next room. I stagger into the shower and/or pull on clothing, release the hound, and it's time for the morning ramble. It starts off easily enough, particularly if I remember to bring my cane, though handling leash, exuberant and desperate puppy, keys and poop sacs is an interesting dexterity challenge. Today I can see properly, so it's a bit easier. Last night the fog was internal and external. Weather and vision. That terrifies me and I spend a fair bit of my time praying loudly that the gods preserve my sight.
But about, say, 300 yards into the walk, it is no longer pleasant. Legs and hips remind me of the MS. They start, ever so annoyingly, to add pain to the walk. Like sands through the hourglass (as the soap "Days of our Lives" used to say), each step adds a soupçon of misery. By the time we're on our way back, the dog is dragging me, looking back to see what the problem is. My legs feel like they weigh 2000 tons, like the weights in Wily Coyote's plots.
I suppose it would be easier if I used my walker, but I'm fighting that. It's even bulkier than the cane and I'm not sure how I'd hold the leash. I suspect bungee cords would be involved.
But we get home and I stagger about feeding the beasts until I can slump myself into a chair.
Which, about half an hour later, is uncomfortable. So I stand to pain.
There's got to be a way out of this cycle. Other than scotch, which does help but which isn't recommended for breakfast, for some reason...

Fog Horn

I am lucky enough to live near the sea - right near Halifax Harbour. It's fabulous. There are two sounds that make me smile every time I hear them - the noon-day gun, and the foghorns.
I wish I had one of those. I'd like to be able to blatt it out whenever I go to do something without thinking. Which is a lot of the time these days as my MS-brain gets more muddled.
Like when I signed up with my local newspaper (a shameless rag). I didn't realize I had agreed to subscribe in perpetuity. So when I changed my credit card and they sent me a note saying that my credit card had been declined and if I wanted the newspaper I should call them right away, and I didn't call, I ASSUMED that meant they'd discontinue my paper. Not here in nice NS. They ran it on for another month. Then charged me. Now I don't feel like I should pay for the newspapers I didn't ask for, but who really knows what went on? I surely can't remember.
Or when I go to buy something and buy it without realizing I have no money to pay for it.
Or when I send in a writing entry filled with errors and spelling and grammar mistakes cos I just don't see them.
That's when I want to pull the chain and blatt out a big foghorn warning for everyone who has to deal with me - but for me, too. For now, I'll just have to hope it stays foggy around here and pretend the ones I hear are meant for me...

Not the hands, please god, not the hands!

I've dropped my keys about 20 times in the last few days. I can't open milk containers anymore without the use of a knife. Bits of paper have to be attached to me with pins or they flutter to the ground.
My hands are losing their grip.
How damn annoying.
I just started loving knitting. I have oodles of yarn to make into things. Yet my hands can't handle it anymore.
I can't read big books (I like big books and I cannot lie). Having to read on an ereader, which is okay except it dies regularly. Grr.
On the good side, I've started needle felting. And since my fingers are numb, I can stab myself with gay abandon. As long as I'm felting red things. To soak up the blood.
But I type my thoughts. What if I totally lose that? Yeah, I can use that dictation software but it's hard and bothersome and just not as much fun as it should be because you have to speak punctuation. Period. Which is annoying. Period. Or is that exclamation point? Question mark
You see how it could be frustrating comma especially since I don't often think of punctuation and just let it happen period Which accounts for a lot of my editing problems comma perhaps period.
New paragraph.
Arggh. And then there are the mystical misspellings. When I get on a  good dictatory run, I don't watch the words form on the page (partially because it is a bit slow and it's a bit like listening to a recording of you speaking just a bit slower than you do). I go back to reread and find the punctuation parts and realize a completely different story has been written.
It's not that it is necessarily a BAD story, but it isn't the one I was writing. I feel like I am in a partnership with HAL. (I wouldn't erase that if I were you, DA)
I need my hands. Take my legs. I've already seen them going. Bits of them are dropping off - the toes went first, numb and no longer available for location. My hips are on temporary strike and need to be promised increasing wages to cooperate. My knees just laugh at me. Shaving my legs invariably results in loss of blood. They need support, preferably 4 points of it.
But my hands - I like them. They are squarish, man-hands, designed for work. And I want them to work. Please?