Pain and MS, including those with an axe to grind

Oh legs. Legs'o'mine. Couldja leave me alone just for a leetle while?
I still don't get it - why is there so much numbness plus so much pain? Surely they should block one another out?
But no, here I cringe, legs repositioning every few minutes while I struggle to feel my fingers on the keys.
I do wish I understood this disease better. I wish anyone understood it better.
And thanks, CCSVI advocates for once again sending me an unnecessarily long and gruesome post to my CCSVI, the terrible temptations post. Every few months you send me one. It's tedious.It's advertising, pure and simple. Usually I delete the comments, made as they are by some mailing robot that spasms, like my legs, unexpectedly, and shoots out blather.
I've decided to allow this one because we are at the point of doing a study here in Canada that looks like it will be carefully designed enough to actually give us some answer, unlike all the observational studies done before. This study will assign patients with venous "obstructions" to control and experimental groups and do mock procedures on the controls. Everyone involved will be blinded as to who got what procedure. then, a year later, the groups will be switched, so everyone will end up with the procedure (important as it is an invasive experiment) and the same person can be evaluated throughout the experiment for effects. I don't know if they are following the procedures with physical therapy, my own personal thought about how the benefits are accrued from the procedure.
So in two years, we should have some hard research results.
Best thing is that the doc who is leading the study, while one of THOSE( neurologist) types, is also one of the most caring, considerate, and thoughtful neurologists I've happened to meet. I've worked with him on the Canadian MS registry project through CIHI and he is a good man, not given to self-aggrandizement, prone to listening to ideas, and open and easy to speak to. I'm hoping the centre in Montreal is going to be led by my other favourite neurologist, another gem of a doc. I'd mention their names but I don't want them to be swamped with people demanding care to the point they burn out. Nice neurologists are not common out there. tremendously smart and knowledgeable ones, yes, but pleasant and friendly, not so much.
Perhaps, unlike my numbness and pain, niceness and smartness don't normally occur together.

But in some lucky or unlucky instances, they do.

A Helpful Book

As a youngish and dating woman with MS, one of the things that has filled me with the most despair over the past several years is my loss of sensation in the...ahem...sexual areas. I consulted with my docs, whose recommendation was to place a bag of frozen peas over the...ahem...area in question and that that would help me feel increased sensation.
Well, I dunno about you guys, but frozen anything DOWN there doesn't sound too enchanting for me or the fellah involved. As one friend said, it's like going swimming in the Atlantic Ocean - cold at first, but okay once you're in...
Yikes.
Now, other than developing a jaundiced eye whenever I see a bag of frozen peas in the market, I haven't had much success with that advice. A friend of mine (who works with people with disabilities and their sexual health) and I got to talking. What if we combined the power of her knowledge of everything sexual and battery operated, and my nursing knowledge and the experience of someone living with MS, and we put together a helpful book?
Not a deadly boring one, but a light, useful one, with advice and drawings and some laughter and fun. That. we figured, could be a help to other people like me.
After all, MS is being diagnosed earlier and earlier, and it sounds gruesome to be sentenced to years and years without any idea of how to have a rewarding sex life. We deserve one, no?

But maybe that isn't what's needed. So we thought we'd ask you. In a short little survey, with no chance we can identify you, compiled on machines somewhere in the deep dungeons of the internet, impossible to trace. Well, maybe not completely impossible to trace, but I've got better things to do than find you. There are all those other frozen veggies to experiment with...

Here's the Blurb:

Dorothyanne Brown, a person with MS, nurse, and epidemiologist, and her
writing partner Karen Kalinowski, a Natural Health Consultant and Sex and Kink Awareness Educator, are collaborating to create a resource for people with MS and their partners about sexual intimacy. 

We've created a short survey, ten questions, to get a feeling for what your
needs are as a person with MS or a partner of a person with MS.

The survey is completely anonymous. We have no way to figure out who answers
it, we plan no cross linkage to any database or physician services. 

It will help us create a resource that will be most useful to you. 

Just click on this link and you will be taken to the survey:
http://www.surveymonkey.com/s/LSLN9XN

Please share widely with others with MS or their partners. Help us create a resource that will work for you.
Questions? respond here or email msandintimacy@gmail.com
And thanks!

"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.....