Arggh - who do you TALK to?

So here's the thing.
I'm losing a great deal of my ability to walk.
This could be because I haven't been as good as I was about going to the gym. Or it could be progression of my disease. Or maybe I've been too bad about my meds. Or I could have something else going on.
So I call the MS clinic.
They tell me to test for a urinary tract infection. Never mind that I have only ever had one of these in my lifetime and that my symptoms are more on the urinary retention side of things. No infection symptoms. Once you've had one of those, well, they are noticeable.
But still I will smile and go forth with my little jar of pee to see if that's the problem. Of course it won't be.
Then I called to Copaxone people today to find out about whether I could skip my shots during my trip to Cuba.
It's going to be a pain to carry needles across that border and keep the medication cool and remember to inject myself every day. And then carry the syringes home. And yes, I do have a "permission to carry" letter, but it isn't in Spanish.
"Oh no," she says. "You have to take it every day or you will get more relapses!"
Well, see, I don't have relapses, so to speak. I just slip gently down, losing a few steps here, having more spasms there, going numb bit by bit. I've been lucky enough to never need hospitalization.
And truth be told, I've missed more than a few of my Copaxone doses.
So I said, well, it doesn't seem to be doing anything for me, anyways.
And she said, "oh you won't feel it doing anything. You'll just be less sick than you would otherwise be."
Well, there's the rub, isn't it?
You can't sense any benefit? Well you still have to take it because the alternative is thrust at you like a threat if you even mention it.
What a wonderful marketing trick. Take it, you won't notice anything. Don't take it and you may completely crip up. Wow. So, if they figure out that your symptoms are getting worse and you dare to mention you have missed a few doses, well, you know whose fault it is going to be. Not the drug company, whose meds don't slow progression, no no. It will be my fault, of course.
I even asked her if I could double up on the dose for a few days before - they are doing a study now looking at taking double the dosage for three days a week as vs the same dose every day.
"Oh no," she said. "That study hasn't been finished yet!" But given that they prescribe the exact same dosage to a 99 lb kid and a 250 lb man, I can't imagine doubling up the dose would be a problem, risk wise. And given that it doesn't slow progression, what's the big deal? The nurse told me it did. Studies differ.
So who do you speak to to get an answer?
Your MS clinic, who are overworked and much more focused on the really ill and their research subjects?
Your drug support nurse, whose main role is to keep you hooked on their drug (though my usual nurse is not like that, thank heavens, or at least is open to discussion)?
Your peers? Sometimes that helps, but there's a lot of bad advice out there.
Research? If you can find it and understand it...but remember the publication bias and the funding issues that lead to the tendency to promote big pharma solutions compared to other things...
It's lonely trying to figure out what to do when living with a chronic disease that isn't understood.
But sometimes, you just wanna...

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.