Once more into the fray, my friends...

May seems terribly far away, as I sit here gazing out at piles of snow and the deceptive sun that hides a freezing wind. But it's slipping up on us...
I'm doing the MS walk in Halifax again this year - I usually volunteer to help out with registration and then haul my sad legs around the route as well. Hoping I can still do that this year.

In honour of the walk, and of my father, who knew how to make every day something worth living, I herein record the joke he used to tell that always comes up in my head when I think of my draggy legs...

Harry kissed his wife and went out for his usual foursome of golf one sunny Saturday morning. When he returned, many hours later, he looked awful - sweat streaming off of him, brambles in his hair, muscles spasming as he walked.
He came in and crashed in the first chair he came to, begging his wife for a drink of anything, anything.
"My gosh, Harry! What happened to you? You look exhausted!"
"Oh it was terrible," Harry said, mopping his brow.
"It must've been. What happened?"
Harry took a long sip of water from the glass. "Well, everything started out fine, me and the guys, gorgeous day, though a bit hot, if I was going to complain...and we'd just started off. Had to wait for the first tee - busy as hell out there today."
He gulped more water.
"Then, we got to the second hole, and doesn't Ralph just up and have a heart attack right in the middle of the fairway! Dropped dead right in front of us."
"Oh no! How horrible," his wife said.
"I'll say. The rest of the eighteen holes, it was hit the ball, drag Ralph, hit the ball, drag Ralph..."


I'm looking for sponsors for my walk - if you'd like to sponsor me and Ralph, please go to my personal page for the MS Walk.  I'd really appreciate it!

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!

A thoughtful dialogue on CCSVI

The MS Society of Canada has posted a series of videos from Winnipeg where neurologists and radiologists discuss testing for CCSVI, limitations of this, and concerns about the research and treatment, as well as sharing their hopes that it will prove to be at least a partial solution. I think it's a balanced presentation overall. The Q&As are interesting and looking at this with my nurses hat on, their explanations are very reasonable.

It is unreasonable to expect testing and studies on this one area (venous stenosis and expansion specifically) to be done everywhere. We already have an overtaxed health care system. I like the view of one of the neurologists that they would want to look at something different - like the progression of CCSVI idea - is it present at birth, when does it develop, is it potentially caused by the medications we use, what does Vitamin D have to do with it, etc... That makes sense, rather than just repeating the initial studies. I'm also in favour of research looking at stenting and veins - can it be done safely? Is there a better arrangement? These other studies would finish up presumably within the time that the first ones would be done and then we'd have a more holistic picture of the issue, how to treat it, what it is caused by.

In any case, the videos are interesting, the neuros are thoughtful and receptive, the radiologist raises some very interesting points. I think, if viewed without an initial negative lens, they offer much wisdom. Bravo MS Society for posting these - wish you had done so sooner!

ARGGGGGGGH!

What is a sweet little trusting soul to think? I am so so tired of having my happy little illusions of the world crushed. It's bad enough the economy is tanking, the wars continue, my body continues to fall apart with MS and my dear ex-mum-in-law continues to perish from ALS.
Do we have to dash my hopes that there is some good in the medical world?
I've worked in the Ontario Community Health Care sector for years. I know how very few patients most of the physicians in this salaried model take on. I used to administer these docs, and on my teams, ever doc had at least 1000 patients, supported fully by a multidisciplinary team. The CHC that I have applied to for care - their docs have way fewer patients. Some have only 400-500.It is an appalling waste of resources. And they will not accept me as a patient because I am complicated, despite their avowed focus on people who suffer challenges. Well, I'm broke, unemployed, disabled, and without a physician. Surely that counts for something.

I am a client of the MS clinic in my former town, and guess what? They never offer any solution for anything, and even though they return my calls, they never want to see me or evaluate me. They expect me to just suffer on. They are of no help. They have kept me on an expensive medication that is not working despite my reports of same. They cancelled my appointment even though I have been complaining about increasing symptoms. They suck.
And then this, an article from a man who very clearly delineates the awful fighting lines of the various players in the MS game. I try to believe the people out there are trying to make us better, if not well, but his arguments make a lot of sense.
Suddenly, I feel a bit like Little Red Robin Hood, cheerfully setting off down the forest path to do good, only to start hearing suspicious sounds in the woods around me.
Unlike, Robin Hood, I have no intention of being eaten by the wolf. I am starting to get angry now. My faith has been misplaced. Even though the only person who has been kind to me in this journey (of the medical side) is my Copaxone nurse, Bonnie, I am still furious about the conflicts of interest that seem to be dragging any hope away.