December 31, 2009

Love, romance, and the eternal doubt of life with MS

It's all very twee, isn't it? The whole vision of love and romance and walking through a landscape filled with hearts and flowers, babbling brooks, sunlight, and sweetly chirping birdies to add music....

Well, I've always had a hard time believing all that - typical first love broke my heart thing. And, as an overweight, very short gal, I've spent quite a bit of my life feeling unloveable. Having MS for years and not knowing it made me feel even more unworthy - tired all the time, cranky when I was too tired to think, numbing and filled with pain in alternates.

Add to that the full MS cover. Now it becomes almost impossible to think that anyone would ever want to be around me for more than a short time, for more than a quick roll in the hay, for more than the good times. Who in this big world would be willing to take on a moody with MS, falling apart lass, who has difficulty with everyday tasks and regularly forgets things on the stove? Who will probably get worse and worse and worse?

I mean, I can be brazen and tough it out, tell myself I am good on my own, be more fiercely independent than ever. I can wear my push up bras and mock men for their attention to silly things such as breasts, I can educate myself and fool myself that I am perhaps alone because I am too smart, I can push away everyone who tries to get through the armour.

I do all of this, deny my need for support, contact, affection, touch, love.

Because I know there are storm clouds beyond the sunny meadow, and I don't want to inflict those on anyone. Not even a dog.

It makes me unwilling to trust in love, to let myself fall into it, to accept it when given. Like the rest of my life, which has become undependable, I figure it's a wobbly thing, given to short-circuiting like my fraying nerves. And who knows? Perhaps I have a lesion on my "accepting love" gyrus or something.

It would take a very patient, persistent, and kind man to lead me down the meadow past the hearts. I'm balky.

I may, may have found just such a man. Fearfully, I take a step into the warmth...

December 30, 2009

Angiogenesis and MS

Increased blood vessel density and endothelial cell proliferation in multiple sclerosis cerebral white matter.

1 Votes

Increased blood vessel density and endothelial cell proliferation in multiple sclerosis cerebral white matter.

Holley JE, Newcombe J, Whatmore JL, Gutowski NJ

Neurosci Lett. 2009 Dec 24; doi:10.1016/j.neulet.2009.12.059

Multiple sclerosis (MS) is primarily considered an inflammatory demyelinating disease, however the role of vasculature in MS pathogenesis is now receiving much interest. MS lesions often develop along blood vessels and alterations in blood brain barrier structure and function, with associated changes in the basement membrane, are pathological features. Nevertheless, the possibility of angiogenesis occurring in MS has received little attention. In this study we used triple label enzyme immunohistochemistry to investigate blood vessel density and endothelial cell proliferation in MS samples (n = 39) compared with control tissue to explore evidence of angiogenesis in MS. The results showed that in all MS samples examined blood vessel density increased compared with controls. The greatest increase was found in subacute lesions where numbers of positively stained vessels increased from 43.9 ± 8.5% in controls to 84.2 ± 13.3% (P = 0.001). Furthermore, using an antibody against endoglin (CD105), a specific marker of proliferating endothelial cells, which are characteristic of angiogenesis, we have shown that vessels containing proliferating endothelial cells were more pronounced in all MS tissue examined (normal-appearing white matter, acute, subacute and chronic lesions, P ≥ 0.027) compared with control and this was greatest in the MS normal-appearing white matter (68.8 ± 19.8% versus 10.58 ± 6.4%, P = 0.003). These findings suggest that angiogenesis may play a role in lesion progression, failure of repair and scar formation.
See also: for a description of angiogenesis. It is what is responsible for diabetes related retinal changes, etc:
How is Angiogenesis Important for Health?
Angiogenesis, the growth of new capillary blood vessels in the body, is an important natural process in the body used for healing and reproduction. The body controls angiogenesis by producing a precise balance of growth and inhibitory factors in healthy tissues.

When this balance is disturbed, the result is either too much or too little angiogenesis. Abnormal blood vessel growth, either excessive or insufficient, is now recognized as a “common denominator” underlying many deadly and debilitating conditions, including cancer, skin diseases, age-related blindness, diabetic ulcers, cardiovascular disease, stroke, and many others. The list of diseases that have angiogenesis as an underlying mechanism grows longer every year.

What else would you do....

Went looking for a photo of letting birds fly and found this ridiculous one, couldn't resist....incidentally, don't let tame birds fly free. They die. In awful ways.

Before I received this gift of MS, I was a fiercely independent gal, always wanting to be the powerful one in any relationship, always withholding part of myself so I could have the strength of being unknown.

I liked to be in charge, the cage holder, instead of the occupant. I'm not sure where this level of ferocity came from - perhaps it's short woman syndrome, or the years and years of life I spent in high school, being the unwanted one, the one with no power. When I finally figured out how to get some, I was intoxicated with it, overjoyed that I had it, amazed that a 4'11" woman could command attention with little more than intelligence (and, if dealing with men, a push-up bra).

MS came along, and took away part of my quick-twitch mind, as my ex would have called it, slowed it down, made it less trustworthy. It made me cry at inappropriate times. It changed my outside persona from the uber-competent one to the bit wobbly one. It made me lose the power I'd accumulated. I ended up leaving work because it was too hard to live with my losses. At home, and protected, I can hide how awful I feel most of the time. I can hide my neediness.

There is grace in surrendering. I am a much better person now - calmer, kinder, more understanding, less demanding of others. Less angry overall. More appreciative of small things.

But in amongst the surrender, I have to figure out a new pathway, a new way to go. In my case, MS won't kill me. So the game plan has to be a good one. Do I want to relax, or keep striving? Where shall I focus my waning energies?

Today I heard from two friends - one is moving on to bigger career challenges and successes. I felt a wash of grief and jealousy in among the happiness I felt for her. I'm relieved that fight is behind me, but I grieve that I can no longer choose the fight, even if I wanted to.

Another was a friend who, when she married her husband, adopted his children . I was asking her how that went, sharing the family. She said it was challenging, but great - when I mentioned that I felt I was done parenting, her question was "What else would you do with your time then?"

What else would you do with your time, then?
What else?


I'd read the books I never had a chance to read while I worked and parented and got my education.
I'd write the books I feel are in me to write.
I'd volunteer in a bunch of ways I didn't have time for before and use what is left of my knowledge to help make the world a better place in the small ways I can.
I'd breathe in the silence of a childless house and enjoy the thrills of a tidy one.
I'd save up so I could travel to Greece or Cuba or Dayton Ohio (and the Erma Bombeck conference).
I'd learn to forgive people easier, to let go more rage about things gone past.
I'd get as fit as I could, be healthy as possible, move as long as possible.
I'd campaign for social justice through the political system.
I'd write a thousand more letters for Amnesty International to help free those who live lives of despair.
I'd walk, crawl, run, wheel the MS walk to raise money for research and support for the others afflicted with this disease.
I'd paint, create, play, have bumptious sex, love, embrace, smile, watch the moon go through it's phases, watch meteor showers, laugh with friends, listen to good music and great plays.
I'd run away to places that lifted my soul, and wallow in them up to my hips. Even if a walker has to come with me.

But most of all, I'd find a way of contributing somehow. I still need to make a difference. Before that, too, is taken away from me.

December 20, 2009


What is a sweet little trusting soul to think? I am so so tired of having my happy little illusions of the world crushed. It's bad enough the economy is tanking, the wars continue, my body continues to fall apart with MS and my dear ex-mum-in-law continues to perish from ALS.
Do we have to dash my hopes that there is some good in the medical world?
I've worked in the Ontario Community Health Care sector for years. I know how very few patients most of the physicians in this salaried model take on. I used to administer these docs, and on my teams, ever doc had at least 1000 patients, supported fully by a multidisciplinary team. The CHC that I have applied to for care - their docs have way fewer patients. Some have only 400-500.It is an appalling waste of resources. And they will not accept me as a patient because I am complicated, despite their avowed focus on people who suffer challenges. Well, I'm broke, unemployed, disabled, and without a physician. Surely that counts for something.

I am a client of the MS clinic in my former town, and guess what? They never offer any solution for anything, and even though they return my calls, they never want to see me or evaluate me. They expect me to just suffer on. They are of no help. They have kept me on an expensive medication that is not working despite my reports of same. They cancelled my appointment even though I have been complaining about increasing symptoms. They suck.
And then this, an article from a man who very clearly delineates the awful fighting lines of the various players in the MS game. I try to believe the people out there are trying to make us better, if not well, but his arguments make a lot of sense.
Suddenly, I feel a bit like Little Red Robin Hood, cheerfully setting off down the forest path to do good, only to start hearing suspicious sounds in the woods around me.
Unlike, Robin Hood, I have no intention of being eaten by the wolf. I am starting to get angry now. My faith has been misplaced. Even though the only person who has been kind to me in this journey (of the medical side) is my Copaxone nurse, Bonnie, I am still furious about the conflicts of interest that seem to be dragging any hope away.

December 18, 2009

So near and yet so far...

CBC television news has scored a big "now now, CTV, getting a little too excited are we?" coup about the CCSVI hopes that all MS sufferers have been offered of late. While the "there, there" aspect of the report is definitely a cross station gotcha, the point is valid - too much excitement has been created too quickly over the thought that clearing veins will cure MS.
I have to admit I fell for it, too - one whole day of my life spent dreaming and hoping and wishing and wondering about what life would be like when I was all better, instead of gently deteriorating as I am now and have been for the past 20 years. What would it feel like to actually be well? What would I be like with no limitations? It was intoxicating.
Then my questions started raising their ugly how safe this procedure really was... and how come so many people needed to have multiple operations...and why would this have such dramatic results when most of these people necessarily had generated collateral circulation from their brains (or else they would have been a lot worse off or dead).
And why was there no difference in outcomes 18 months after intervention between people with progressive MS and control subjects? Surely there should have been some slight improvement, shouldn't there? Unless we are talking about a complex disorder here, perhaps more than one....
I am reminded of the discovery that breast cancer was really two different diseases depending on when it occurred in a woman's lifetime, that it responded differently to treatment depending on which disease it was. I'm also reminded of ulcers and the discovery than antibiotics cured them, most of the time.
Fact is, we often get things wrong first time around in medical and other research. Rather than immediately jumping on those cautious about the possibilities and accusing them of wanting to keep people ill (which I imagine must be very dispiriting for the researchers who want to replicate things and ensure they are right before jumping on the bandwagon), we should be thankful for the doubters.

I know how the MS people feel, being one myself. I know desperation for cure. I also used to be one of those people who wanted to always move forward, without looking behind to see what was falling off the truck as I sped along. I've worked for people like that, too.
But being off and unwell with MS for a year now, almost, has given me some perspective. Let the experts review things. Yes, push for research, broad, diverse research that may give us some clues. Push for free research, unbound by results orientation, as free research is often where the "ahas" are found, rather than in research that looks at how to make a pill 0.00002% more effective. Let the scientific brains do their random walk and discover miracles.
But wait until the proof is in before leaping to try untested remedies.
What worries me is that many people will beg for surgery, get it done, and die or suffer greater problems, and this will end the funding for further research into this promising area of CCSVI.
Be patient, people. We are all desperate. Breathe deep.

December 17, 2009

A perpetual holiday is a good working definition of hell. - George Bernard Shaw

I know, it seems counterintuitive. But when you are used to responding to life, to the everyday crises, to the demands from bosses, clients, traffic, kids, whatever, the sudden void of an enforced perpetual holiday is quite amazing. Not only do you have to motivate yourself to move every day, you also have to find a reason for getting up in the morning, for doing the basic things like showering, eating, speaking to others.
It's all okay for a while, but when you find yourself longing for a pussycat to mew for food, you just know hell has intruded into your life.
We all want meaning in our lives. We want to think that what we do matters, that we have a reason for being here. But when you are suddenly disabled, what is your reason? What are you doing, save using up resources? Oh, I know the voices that will rumble in from the edges - "of course you are important - your kids need you!" or "Of course you have value, you have so much you have already done - you can just relax now..."
I imagine this is why the retired are so busy - to quell that little voice within themselves that they don't really matter anymore, that they could be spit off the globe like a watermelon seed and although people would grieve, the world would not be perceptibly worse for their absence. This is, I think, what Shaw was referring to in the quote above...
In the quiet of a less busy world, you have to face yourself more in the mirror. Instead of a flight by on the way to activity, you have time to look deep deep into your eyes and see the balance of your life - the good, the bad, the places where you have missed the chance to act, the places where you've acted where you shouldn't have, the people you've helped, the people you've hurt. It's not always comfortable. It can be can freeze you into immobility, or propel you into frantic distractions.
And then you realize that you still have many many years left on the planet, and you need to make them worthy of the gifts you've received.
Just surviving is not enough.
At least, not for me.
Still searching...

December 6, 2009

Trigeminal neuralgia, or the joys of a rictus grin

TN, both acute and chronic, is a frequent gift from the Mad Sow.

"Trigeminal neuralgia (facial pain) is characterised by brief episodes of intense, stabbing, electric shock-like pain on the face. These episodes occur spontaneously or can be triggered by light touch, chewing, or changes in temperature (i.e. cold). The pain is so intense as to be completely disabling. In addition, weight loss is common because oral triggers prevent affected individuals from eating enough to maintain adequate nutrition.

A less common form of the disorder, called" a typical trigeminal neuralgia", may cause less intense, constant, dull burning or aching pain, sometimes with occasional electric shock-like stabs."

Okay, this is all very jolly, as is the comment that it is a very treatable condition. Surgery, medications, nerve assassination all can help...however...

First, one has to see a doctor to have it treated. As my MS clinic makes a game out of not seeing patients, this seems unlikely to happen in my case.

Secondly - weight loss? Well, that could be true - fact is, with the pain and my difficulties in swallowing, there are few things I have the will to eat. Unfortunately, ice cream and mallomars and fudge and wine and beer and all that fits sweetly down the old gullet...So I have yet to notice any advancement in my weight loss goals. Alas.

What I do notice is fatigue and pain when I have to talk, always present facial pain, total facial numbness, and the feeling of dropping ice cream, mallomars and fudge out of the corner of my mouth....smiling, one of my favorite things, needs to be paced during a bad stage, or I live to regret it, with needle sharp pain up along my eyes and into my nose. I have a constantly running nose and frequently running eyes...

("Does your nose run and do your feet smell? Why, you're built upside down!")

It's SO attractive. Of course, I probably feel it more than it is visible, but on days like today I feel like my eyelid is drooping, my lip is spasming, and my cheek is protruding into space.

On the good side, I've lived with the pain for so long that it is no longer completely disabling. It's just a constant undercurrent, sometimes more turbulent, sometimes calmer. It's hard to believe it has been my constant companion since 2002. It snuck in, feeling like a gentle caress on my face, fingers stroking my cheek like an inattentive lover to the point of irritation. Then sharp pain along the line from ear to nose. Then tearing, and lip numbness, and hearing problems, and all along a sneaky chronic pain that I live with until an unwary smile knocks my socks off with a fiery line from ear to face.

Unlike my other varied MS symptoms, I don't ever enjoy this one. Some of the others are kindof amusing for a while, but I suspect that's because I never know what I get next. The ones that hang around lose their amusement value. So far I have this facial pain thing and now chronic spasticity in my flexor muscles in my legs. I'm getting bored with both of them. I'd ask for a new symptom, but I'm afraid my body would agree!

December 3, 2009

j'ai perdu le fil - or ccsvi and MS

Or is it: Ich habe den Plan verloren (I've lost the plot)?
Okay, reality is I was thinking of the threads of life with MS and then I went looking for a photo to use and there was this lovely one of Frances and her ball of string from Minnesota, and well, I just had to include it.
In any case, I haven't been posting because I've been like a kitten with Frances' ball (or perhaps a more manageable one) around this whole venous insufficiency cause of MS thing. One moment up, another down, one tangled up in hope, another tied up in cynicism.
On the one hand, it makes logical sense. As one commentator said, we've always known MS was an inflammatory disease, but we just didn't know what caused the inflammation. Makes sense that the iron deposits in MSers brains might stimulate some inflammation, eh what? And the refluxing thing seems reasonable in terms of laying down more iron than should be there. In any case, it all seems promising, just (alas) not right now.
On the webboards, there are hysterical requests for "where can we get this done now!" that sound very much like Veruca Salt in Willy Wonka. We don't even have ultrasound thechnologists who can do the assessment properly yet! And no one seems to be thinking about the risk of having a loose stent flowing right directly back into your heart...from the very pliable and easily torn venous tissue. But, like the gruelling stem cell research that several have gone through, if it appears to offer a solution, we want it NOW. I was just at an education evening about stem cell research where everyone was begging to have their immune system destroyed in the hope of some recovery. Two weeks alter, now everyone is begging for something completely different...
And there are the conspiracy theories about why we haven't heard of this before now - the "big pharma" companies and neurologists are in some evil conspiracy to keep us hooked on their drugs forever. Well, yeah, big pharma stands to lose some cash if we all get healed, but it's gonna take a while, and I imagine we'll still be taking the drugs for the foreseeable future, given that the iron won't be leaving our brains anytime soon, even if our veins work better. We'll still need dampening of our immune reaction to it.
Reality is, research in MS is charging forward at a great rate. I am quite amazed at the progress made in the last 10 years - heck, it's no wonder mine wasn't caught until just recently - it wasn't even well known when my symptoms arose. Even now, most docs know nothing about it. In the past few years, we've been given some real tools to delay things - a good thing while they work on the cure. The cure will take time. Unfortunately.
This leads me to resign myself to my probable fate. Perhaps this means I am not fighting enough for access to care, for treatment, for whatever. But I don't have faith in any of it yet. I dutifully take my Copaxone, while feeling it is doing no good, because it's the only alternative at present. I haven't noticed any reduction in flare-ups, really - in fact I am getting worse.
But fighting takes effort, and is wearying. I am too tired to fight with the medical system for unproven remedies. I'd rather exercise, try to keep well, rest, than take thousands of drugs for every symptom. And watch for chances where I can contribute to the research, to help, if I can, the 1000s behind me who are still young, who are still working, who have families still to raise. Yeah, I could push to the front of the line if I wanted to, maybe. But I remember being whisked past people holding their entrails in so I could get a CT scan quickly when I lost my vision. I felt foolish then. I'd feel foolish now. I can still walk; so many can't. My kids are grown; others' aren't. My parents are gone; others have parents to care for also. I can wait. And work on my own ball of string.