Fampyra diaries

I've recently been started for the second time on the MS drug Fampyra. It's been approved for use in people with Multiple Sclerosis to aid walking speed and ability.
I tried it back in January and had to stop it because of overwhelming vertigo  - I think there were a bunch of factors at play there, from recovery from a trip to Cuba to the flu, to a urinary tract infection (one of the known side effects of Fampyra, and unusual for me). Now that I've recovered from those things, I thought I'd give it another go.
It's not inexpensive. A monthly dose costs upwards of $600. My drug insurance doesn't cover it, though I can write it off on my taxes, I suppose. So it's gotta be good for me to continue it.
When I tried it last time, my walking dramatically improved. I could walk much further and faster and for a longer time - a significant change in all three parameters. But is it worth the money?
While the drug, a potassium channel blocker, is approved to help with walking, I am wondering if it will also have an effect on other functions affected by MS.
Here's what the MS Society of Canada has to say about the drug:

Details
Biogen Idec Canada announced that FAMPYRA (fampridine sustained release tablets or fampridine SR) is now available for prescription in Canada. Health Canada approved
^PrFAMPYRA™ on February 10, 2012 for the symptomatic improvement of walking in adults with multiple sclerosis (MS) with walking disability (EDSS 3.5-7). FAMPYRA is the first approved treatment for walking impairment in adults with MS.

Fampridine blocks tiny pores, or potassium channels, on the surface of nerve fibres, which may improve the conduction of nerve signals in along nerve fibres whose insulating myelin coating has been damaged by MS.

Common side effects of fampridine include urinary tract infection, difficulty sleeping, dizziness, headache, nausea, weakness, back pain, problems with balance, MS relapse, burning, tingling or itching of the skin, irritation of the nose and throat, constipation, indigestion, throat pain. The initial prescription should be for no more than 4 weeks, and assessment for improvement in walking should be carried out within that timeframe.

Please contact your physician for more information about treatment with Fampyra and the FAMPYRA In Motion™ program.

My excellent doctor here has seen improvement in cognition and sensation and urinary function and all that in her other patients as well, which makes a certain amount of sense since the effects are systemic and the conduction, if improved in walking nerves, should also be improved in other central nerve pathways. I've been having problems with my vision for a few months now - blurring and variability - and I am seriously hoping for some improvement. Plus I'd like to be able to walk well enough that I could lose some weight, thus making walking easier even if I'm off the drug.

I thought I'd keep track of things on my blog, in case anyone else is considering the drug. We all know that anecdotal reports don't = truth but maybe my experience will be of use to those of you wondering.

Today I went to the pool, as I do two to three times a week, and swam 32 laps. I can do up to 50 on a really good day but have been generally holding steady at 36 to 40. I felt good, but after two pills (last night and this morning), my body feels different. Meatier, somehow.

I'm somewhat dizzy, and I am having difficulty with typing but that's normal for me. Onwards ho!

my brain aches....

Just had phase two of my cognitive testing for a study being done here in Ottawa - it involved one testing session, a second two weeks later, and a third in three years. It's supposed to evaluate cognitive changes in MS over time.
In some ways it was reassuring - I can still add most numbers, can think of new ways to combine sets, can tap the space bar at a certain rate. I failed utterly at the "reorganize the discs on the pegs" task and realize I need more time in kindergarten and soon before my abilities to grasp spacial solutions leave me entirely.
Remembering words, numbers, story elements - tasking! I had to close my eyes and block out all other stimulation to focus.  Wonder if I could do this during meetings at work?
Of course, got home and my blood sugar was a mere 2.8, which might have accounted for some of my fogginess.
It's difficult tracing the effects of different chronic diseases, and also I am wondering about the effects of medications and the causation of various troubles in my body. Where does one disease begin or end?  Where do the medication side effects become enough to discontinue them? What causes what?
I am so confused, and it's not just from the testing....


Curious about how you'd do?  Try going to this test site -there's a quick little test you can do that gives you a bit of an idea about some of what I did. http://www.neurology.ufl.edu/memory/cognitivetest.shtml

Whoops! Or is that Hmmm...

Every once and awhile I think I really am fine, that there isn't really much wrong with me that a few years sleep won't cure.
And then I pop into work.
And I realize that people thought I was losing it way before I did. That my brain was misfiring for longer than I thought, that I said and did things that I no longer remember that offended some, created pity in others. That people thought my job was too difficult for me, in fact for anyone.
And I don't know if that's because it really was all that difficult (it was pretty busy) or if it was just me and my brain holes that caused the problem. So then I wonder - have I been acceptable to other people? How much hurt have I unwittingly wrought? How impossible have I been, really?
And then I want to curl up in my little hole and pull the door in around me, shutting out the world that apparently feels I am unstable, unpredictable, unreliable. It kills me.
And I try and learn something new and it doesn't stick, but slides to the floor, unrecognized and unmissed.
Horrifying.
But, like the lass who is remaining plump in case she gets anything like a serious illness and needs it for strength, at least I've bolstered my brain and have some grey cells to spare. I think. If I can only keep them from leaking out of my mouth....