October 22, 2012

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...


Muffie said...

After having taken Copaxone for several years after I went off Avonex, I finally saw it as you do -- this is doing me no good! I informed my neurologist I wanted off, and his assistant sounded just like your nurse, she even used the same lines! (I wonder if there are prepared scripts for them to use!) Anyway, as master (mistress) of my own body, I took myself off on my own. Has the disease progressed? Yes, but it would have anyway -- it's a chronic, progressive disease. Did it happen quickly? Did any one symptom get really bad? Absolutely not! Do I regret the decision? Not in the least.
My suggestion -- do what YOU feel is the right thing for YOU! Oh, and enjoy your trip!

Diane J Standiford said...

Me too (...I wanna...), BLOG BABY BLOG, the BIG PHARMA ain't listening to us! At my job with electric co. we had the same spin: "But I bought the windows you told me would lower my bill--it's higher!" "Yes, but think how much HIGHER it would have been without the new windows!" I NEVER told a customer that. INSANE
PS--I'm adding your blog to "The Best MS BLogs" list on my blog soon. Keep s'meylin.