New Challenges, or isn't it lovely Fampyra takes away some of my numbness RIGHT now when I need it?

Ah, knees.
Those humble, poorly designed bits of skeletal architecture that support our weight and allow us to move and somehow have kind of adapted to us being upright.
Those multi-part pieces of garbage that give out on us with annoying regularity...

Apparently mine wouldn't get much on the Antiques Road Show. I can hear the announcer now, "Well, there has been some damage, as you can see here, and here, and over there, and here, and that WILL affect their value. In fact, they're not worth as much as you paid for them."
"Oh, they were free? Well, that doesn't change my point...you may want to keep them for sentimental value..."

No thanks. Sentimental value isn't much when the thing you are talking about causes pain and mobility limitations.

For a while I was in denial about my knees. I assumed my leg spasms were due to MS, which they are, but what I didn't realize was that my legs were spasming in response to the screaming pain from severely arthritic knees that wasn't making it to my brain thanks to the MS.

Sortof a win/lose situation.

But then I started taking Fampyra.
Hooray! Sensation is creeping back.
Damn. Sensation is creeping back.

So, whereas before I could leap about with gay abandon as long as my MS would let me, now every movement is accompanied by a chorus of groans and winces.
My knees have awoken.
I am forming new wrinkles to cross out my smile lines.

A sucker for punishment, I trotted off to see the orthopaedic surgeon about a replacement. He looked at my X-rays and asked which one to replace, as both are entirely wrecked. So I'm doing them both, at the same time. I figure my docs oughta get a paper out of this, given the combo of MS and bilateral knee replacement. Can't be that common.

It's a bit of bravado, I've got to admit. I am always best running at the high hurdles. Little ones bore me and I can't get excited about them. But this one is significantly terrifying enough that I am actually going to prepare for it, do my exercises, try to lose weight, etc, etc.

Oh yeah, and take my lifelong wish train trip across the country before I go under the knife. Just in case.

Multiple holes in my head: Fampyra diaries and how do you know if you are crazy?

Do you remember that old elementary school question about "How many holes do you have in your head?" where you had to remember all the openings through which a bean may or may not be pushed?

Well, sometimes, I feel like there are others, deep vacant spaces with echoes. No beans growing there, but a certain lack of certainty, as it were.

Quicksand-y.

I find the cognitive changes in MS the worst, because HOW DO YOU KNOW IF YOU ARE HAVING THEM????

At least when my legs don't work, I can see that, clearly. From the floor, maybe.

I think of the happy demented patient who doesn't know what he or she doesn't know, and then I wonder...hmm. Am I really confused or am I still mentally sharp? Do I just THINK I am mentally sharp when really I am barely able to mouth breathe?

Or, more alarmingly, am I mentally ill or just getting fed up?
It's almost impossible, mes amis, to tell the difference.

See, I'm generally pleasant. I smile at strangers (which leads to some odd situations) and I am kind to waiters and coffee servers and such. I try to be happy and cheerful and useful and sweet.

But every once and awhile I get angry, or fed up, or annoyed. Like most people. Rather less than most people. And when I let that demon out of the bottle, it seems everyone has to take me to task for it. I don't throw things, I don't hurt people. I get angry, at being misled, or not told the truth. I say things, like "This is where I draw the line". Because, y'know, it takes a lot of effort to figure out the truth when your mind is as foggy as mine. So when someone is deliberately misleading, well, I lose my temper. It's true.

And then all it takes is someone to tell me, "I never said that," and I slip into panic land. Maybe they didn't say it. Maybe I just misread it. Maybe I'm losing it. Maybe I need to plan for regular assessments, a nurse in the home to keep me away from sharp things, etc.

So, I took myself back to school, at my advanced years of 55+. I took myself to a creative writing school, a fairly demanding one. My brain gets seriously tired at the end of a writing day. I often can't even speak any more. Fortunately my cat doesn't expect too much in the way of conversation.

And I restarted Fampyra, trading my financial stability for this last kick at the writing can. It DOES make me sharper. I CAN concentrate better. I can walk better, too, managing a 5 km walk and a 3 km MS walk 2 weeks later.

Unfortunately, it makes me react quicker, too. It's like the Fampyra is lighting up my hippocampus, my limbic system, my amygdala, by blocking those potassium channels.

So I lose my temper quicker, too.
Or maybe some things just are annoying?

I just don't know.

Fampyra diaries: epilogue

Hey all - 

Well, Fampyra and I have parted company, at least temporarily. I was finding it contributing to my gastric reflux, it was disturbing my sleep to the point where my little FitBit was recording me in bed for 9 hours but asleep for 3. I'd think it was the machine but before I took Fampyra and after I stopped taking it, my sleep hours lengthened to 6 or more. So I must've been doing something when on it.

Tough to guess as I am in bed alone (see previous post) but thats my thought.

Plus I can't really afford the $570 monthly charge - I could, I suppose, if I really felt it was helping that much.

Of course, now that I'm off it, I am having increasing trouble walking but to be fair, I was before I went off it, too - just the progress of the disease, I think.

I have an appointment with my doc in October and will get re-evaluated then. She may think I should try it again. I may differ. 

If any of you have had sleep disturbances when on Fampyra, write it in the comments....would love to know how everyone else's experiences are. I just know I need more than 3 hours of sleep a night...

Head and shoulders, knees and toes : Fampyra diaries 3

Well, I'm a shower of sh** today, as my charming ex-father in law would put it.

On Fampyra now for several months, and I am walking better. Is it the Fampyra? Who knows.

I'm also having a lot more spasticity in my muscles. Fampyra? Who knows.

Last several days, my legs and feet and bum have been very unhappy with one thing or another. Twitching, spasming, my toes curling up or just painful and very touchy. Shoulder was damaged in another incident, so I'm hobbling along, a mass of unpleasant sensations with no where to put them.

I've taken to using my rollator if I have any distance to walk. Sigh. Sexiness quotient = 0.
Of course, staggering like a drunk leads to entirely the wrong sort of attention. Tough call...

So, slurping bafclofen and my medMJ and hoping the pain goes away soon.
Frustratingly, sometimes it does, completely, for, like, ten minutes, and I can walk like a normal person and my hips and knees stop complaining. Then the mask drops back down again and I am writhing.

I suspect a new lesion in my spine...maybe some compression there? As we all know, it's foolish to diagnose yourself, but so much of chronic disease management is just that.

Keeping on with Baclofen, Fampyra, and now back on Cymbalta to deal with the depression caused by the holes in my head. Maybe it will help with pain, too - it did before. Polypharmacy, here I come, yet again.

Am paying for my Fampyra now after getting two free sample months. Don't know if the benefit is worth the cost. will have to consider when this batch is done. It DOES seem to be disturbing my sleep pattern.

Fampyra diaries, 2

So far the vertigo that forced me off Fampyra last time seems to not be present, thank heavens.
Is it helping? Well, I FEEL different. Swam on Friday and found it harder to swim but that's cos I was going a lot faster - normally it takes me a minute per lap, and Friday I had knocked that back to 45 seconds.
Significant improvement there, but it still feels like my body isn't quite right.
MS walk tomorrow. Apparently there's a 3 km route. With luck I'll make it all around in good time.

Vision still different than it used to be. I suspect either I am over my optic neuritis or just getting older - haha!
Might be time for another visit to the eye doc.

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!