12.31.2010

More about CCSVI, from a thoughtful voice.

http://vimeo.com/17889703
Kidnapped from Marc's site, the Wheelchair Kamikaze http://www.wheelchairkamikaze.com/

This doc explains a great deal about the science and lack of science still existing around the CCSVI thing.  He does say venoplasty is very safe (stents ARE NOT), but he doesn't address any problems caused by repeated venoplasties.  he also explains some of the structural difficulties in diagnosing CCSVI as versus regular venous functioning.  It's well worth a listen.

For my money, I still don't understand the why.  When the doc here says he has no evidence that the stenosis is correctly diagnosed and there is further, no evidence that it has any relationship to brain disease, why does he then say it's okay to do it?

My older brother is a gastroenterologist. When he joined his new practice, he was reprimanded for not using the fancy diagnostic machines as much as they had budgeted him to do - he deals with children and prefers to be as non-invasive as possible. But his partners weren't happy, because in order to pay for the fancy machines, they had to thrust x number of patients through it. I can't help but feel suspicious that some of the eagerness in for profit centres to do this procedure has to do with this pushing to use expensive machinery.  A good bunch of we MS patients, demanding treatment, must make these places sing with joy and order a new set of post-its. (I worked in the non-profit sector and lemme tell you, a new order of post-its, even the cheapie copies, meant there was excess money in the budget - otherwise we reused photocopied paper, torn in fourths).

I keep hear the phrase, follow the money.....yep, the drug companies have had a healthy chunk of it up til now, and you bet the other sectors of the health care system would sure love to have a handle on a source of money such as we provide. Especially if we have to be re-plunged frequently! Wahoo! and get those Jaguar keys, Macie, we're going for a ride....

Sorry.  End of year cynicism. It'll pass. Til then, Happy New Year All, and Never ever get a stent in your neck veins, okay? It's dangerous.

12.16.2010

"Well, it looks like you've just gotta live with it...."

Isn't getting older grand?

The thing with having MS is that you never know if a new crazy thing going on with your body is a transient (with luck) sign of your MS, or if there is something else wrong ticking away in your body.  After all, a ms body is, as we say in the fiction game, an "unreliable narrator". It makes one feel a bit of a neurotic.

I remember being in agonizing pain for several months, thinking it was just fibromyalgia, only to find I was suffering from bursitis in my hips and a torn rotator cuff. I mean, really.  One night a few months ago, I had agonizing pain down one side and thought it was a muscle spasm, hopping in and out of the bath several times to relax the muscle and wondering why it wasn't working.  Well, it was a kidney stone, so no wonder.

Now I have lucked into an excellent nurse practitioner who actually believes in preventive health care. She has sent me for various tests and picked up all sorts of interesting things, none of which are acute enough yet for the people she refers me to to find interesting.  So I am in the bizarre situation of waiting to get worse.

Which is pretty funny when you pair it with the MS thing of "going to get worse". So I am under observation for my kidney stones to see if they grow any bigger, am waiting for the gallbladder attack to demand removal of my gallstones, and now just returned from a rehab doc who looked at my knees (and my insurance) and said, "hmm.  Well, they don't look too bad - even if you can't walk on them reliably.  So let's just leave them, shall we?"

And she explained that the reason my knees were malfunctioning was that my hips were weak.  This after months and months of squats and exercises of the hip variety.
So I suppose this is where the rubber of my body hits the road of the MS. I remember early on going to a physiotherapist because one leg remained weak despite exercise. I guess the exercises are helping me stay relatively okay but not really improving much.

I just wish, sometimes, that someone out there would say to me, just once, "Well, I've got JUST the thing for that. Let me go get it and in a few minutes you'll feel as good as new!"
No wonder people are flocking to CCSVI despite the dearth of positive results and the gradually accumulating negative outcomes. We're just so tired of hearing, "Well, it looks like you're going to have to just live with it."

Unfortunately (and here I would like to add "Merde alors! piss piss piss!" as I do in situations that are fraught with disaster), I think they may be right, and we will just have to adjust to our bodies gradually getting worse every day, until they become bad enough that they become interesting.

And hope that we stay boring for just a wee while longer.....

12.09.2010

Well, I'm not happy.

Yep, the Mad Sow is positively flipping. Went for a recheck of my eyes and their visual fields today and my lovely opthamologist is sending my report to my neurologist, intimating that things are not better and are, in fact, worse. Mind you, optic neuritis, from what I read, gets gradually worse over a period of days to weeks.  Then it can resolve itself, or, alternatively, result in permanent vision loss. Lovely.
Way back when I first got diagnosed with this disease, I bargained with God.  Okay, I said, I can cope with the physical things (some of them - I really wasn't hoping for incontinence and such) - but leave me my mind. So when the cognitive/emotional things took over, I was a bit miffed. Now I'm bargaining again - listen, I know I can never find my car, or add up my bills and I over tip to extremes because figuring out 15% is just too hard - but you KNOW I love reading and writing and I kindof need to be able to see for those things.
And then parts of my vision wander off. God only knows where they've gone.  The eye doc thinks it is all quite mild right now, for which I am totally grateful. However, I'm wary. And oh so tired, fatigue being the other major sign of this particular flare-up.
I'm not happy. The whole shootin' match has joined in, making my left eye unable to hold position for the test (the vision loss is in my right) and my legs are twitching to beat the band. and if I didn't have a puppy to tend to, I'd be sleeping all the time. Blah blah blah.
But enough whining.
Things can only get worse, so I may as well enjoy what I have now. I'm off to read a book. While I can.

12.01.2010

Doctor my eyes have seen the years

and the slow parade of fears without crying
now I want to understand....

Today I finally bent and took my eyes to be checked at the eye doc's place - they've been giving me a bit of grief lately, giving me needle sharp pains at times, followed by blurring. Especially my right eye.  I know I've given up on doing close work even with my glasses on, as I can never rely on the darn things to focus when I want them to.
http://www.nlm.nih.gov/medlineplus/ency/imagepages/1143.htm
So I got my visual fields tested and discovered I have a slight and somewhat scattered loss in my right eye.  Eeeeeks.
Can I just mention this possibility of vision loss scares me most of all?

Ah well, perhaps it's just a flare-up. Or maybe I just have dry eyes and it is all just fatigue from the testing.  I go back for a retest next week, and I'm hoping all is better and I just wasn't paying attention. Please. Please?

Doctor my eyes
Tell me what's wrong
Was I unwise
To leave them open for so long...
http"//www.youtube.com/watch?v=pCTYxIsLThA