Why all the fury about CCSVI?

Whew. Apparently there will be an announcement about CCSVI made by the NL Health Minister at noon today.

Instantly the chatter lines light up. The CCSVI advocates are hollering again. They yell, they tirade, they do personal attacks on neurologists, the MS Society, the people who work at the MS Society, drug representatives, cardiologists, radiologists, that guy that's walking by the window, anyone who doesn't eat pasta, that annoying mosquito.

It's like as soon as you mention those four initials, you've poured alcohol on a fire.
From my way of thinking, I don't find such ranting persuasive. The pro-CCSVI people are sounding more and more like a cult of late.

We've seen this before, folks. Remember laetrile?

I don't know what will transpire regarding CCSVI and MS. I hate the medications we have to take that we aren't sure will do anything and that cost us a lot in terms of money and side effects (potential and present). I hate the fact that I have to take medications at all. I particularly hate that Copaxone has been fined for overcharging and they, TEVA, just wandered out of the discussion, grinning and patting their fat wallets. While gesturing with their other middle finger.

(But then, I have high cholesterol, too, and pay into Crestor's vast resources while eating potato chips. Thus supporting TWO evil industries. I feel kind of silly grousing about big pharma when I lack the self control to avoid them.)

But interventional radiologists are making money on this, too. They have better press at present, true, and maybe that's because a great many neurologists are, unfortunately, just not nice. Or they are frustrated dealing with a chronic disease for which they have no real hope or answer, despite years of research on it. Brains are, apparently, complicated. Immune systems even more so. Who designed this system, anyway?

In any case, the jury is still out. We're devoting resources to investigating this CCSVI thing, that, unfortunately, doesn't seem to be coming back with positive answers for many.

And any who raise a cautionary hand are being demonized.

This is a confusing disease. It's awful and hopeless and expensive and leads many to suicide. How about stepping back and stopping the attacks, eh, CCSVIers? I, for one, would be more tempted to listen. Right now I wish the whole thing would go away.

Rain, rain, go away...

Well, to be fair, the sun that's been hiding for the last several days is actually making an appearance today. I love feeling it on my skin as I curl by the windows.

No, it's the internal rain that's getting to me.

Battling depression isn't pretty. When part of it is due to organic brain disease, that's even more fun. Sometimes I don't even know who I am any more.

I'm disorganized, I overspend, I do silly things with my short term life choices. Sometimes it's a bit scary as I try to negotiate around the me and me-but-messed-up parts in my head.

I probably should have a keeper, someone to be accountable to. But in my twisted mind, I don't want anyone to play that role.

I feel a bit like a badly behaved horse, trying to fight her way out of a stall, but resisting the halter that would lead me there.

I wish they'd get a grip on what was going on in our heads, we MSers. Some of us have no cognitive or emotional problems; some of us hide them and suffer in silence; some of us display them for all to see.

Last week I bottomed out and I still feel like I'm in an unreal state, not really here, not really present. It's bizarre, like I'm recovering from a bad cold or something. My brain is crowded around with clouds and mist.

Where is that sun?

Goal setting and struggling

I'm heading to Newfoundland this summer. I can't afford it, and probably shouldn't, but I've always wanted to see the glorious island, and I want to go while walking is still possible for me.
It's becoming increasingly evident that walking is slipping away.
My MS seems to have settled in my "spanx" area, neatly encompassing the Monty Python naughty bits, creating numbness and spasms and weaknesses by turns. My hip flexors, while toned, refuse to propel me forward affectively - they pull oddly, knocking my knees off balance and causing knee pain. Right now I can walk less than a kilometre most days.

The boat cruise I want to take to see the fjords of Gros Morne Provincial Park (the one on all the wonderful tourism ads) requires a 3 km walk to reach the boat. I am travelling alone, so getting someone to push me in a wheelchair isn't an option. Instead I'm investigating using my walker, Nordic Poles, canes, etc. And practicing walking in the gym. http://www.bontours.ca/galleries/index.htm

I know I'm strong. Yesterday I carried an over 100 pound exercise bike out of my apartment (with help) and raised it over my shoulders to put it in a truck.

It's just the conversation between my muscles and nerves that lets me down.

So I continue to practice, knowing full well that it may mean nothing in the end, if my nerves shut down.

Back from the gym: managed 15 minutes on the treadmill, 15 on an elliptical ARC trainer, lots of core exercises. It was a good day...today.
Toes crossed it continues.

http://youtu.be/Rqh8Jqu8tIk

Exploring - how do I do it?

I'm plotting a trip to Newfoundland this summer, while I can still walk a bit. But even with the "bit" left, I'm wondering how best to get around. I hate my giganto unsexy walker. It looks old-lady-ish and is huge. A three wheeled one is smaller but doesn't come with the welcome seat. Canes are difficult to manage if you want to use your hands. I don't have a scooter.
Went looking on Amazon to see if I could find a sexy all terrain walker. Yep. It's there. Cheaper one costs tons. More expensive one is around the $1000 mark.
This being a crip ain't cheap.
So I'm emailing the people in Nfld and asking them how I can see as much as possible given my limitations. And they are coming through, charming folk that they are. The place where I'm staying near Gros Morne, Entente Cordiale, gave me a whole list of places I could see "just from your car". Others give me hints of activities still open to me.
I suspect I am going to like this place.
I just wish I had the right equipment to get around there.  Any suggestions?

How does one say goodbye?

I'm feeling pretty damn blue this morning. And angry. And frustrated. And just plain fed up.
Part of it is, I'm sure, the overlay of fatigue I've been dealing with for weeks now, so heavy it is like a Nova Scotia weather forecast - alternating between foggy with sunny periods and sunny with foggy periods.
But the deepest indigo is about my dog.
Chutney. Sweetest poodle ever, but still a puppy, given to scrambling off after interesting smells, wanting to play, demanding attention and love. As my walking capability has rapidly decreased to where it is a rare day when walking seems like a good idea, Chutney becomes more of a problem. He knows I'm in pain. He follows me around, holding a toy, looking at me sadly with his brown eyes. He foolishly has to pee and poo, and today, when ice covers everything, the near miss of falling is scary. I can't see managing a puppy and a walker together. He's strong enough to pull me over.
Initially I thought I could handle having a dog. I got Chutney as a statement of hope. I was moving to Nova Scotia, my life was moving forward, I just knew I'd be better in a more temperate climate, instead of suffering through the heat of Ottawa summers. I knew there'd be beaches for Chutney to romp on.
What I didn't know was that I wouldn't be able to easily walk those beaches, that pain would accompany me everywhere, that my leg spasms would become so significantly worse.
Chutney isn't without his faults. He knows when I'm too tired to play and he uses it to be bad. He whines if I don't pay attention to him and he costs a fortune in doggy daycare costs I can ill afford, but feel I must so that he gets some sort of quality life. The cost in treats alone is harsh, but he needs things to chew, probably because he is so frustrated with having to watch me sit about all day.
So, it's time for us to part. I have a friend who has a friend who has found him a home with a yard to run in, another dog to keep him company, a healthy family that can play with him and take him places and afford the food and toys and such. I'm hoping they like each other and that I like them, cos I won't send him away with anyone I don't like.
But...I am broken-hearted. To go with my broken, broken body.

Well, thanks so much for that...

I subscribe to an email feed from MS Answers!! http://www.msanswers.ca/Home.aspx?L=2
I love the way it is titled in my email box with two, yes two exclamation marks. Ooh, I think. I'd better go check THIS out!!!

It's a Q&A written by neurologists and MS nurses and physiotherapists and such, in response to questions sent in by patients and caregivers. I have to say, though, the answers are underwhelming and often just damn depressing.

Like today's, below. Essentially it says, yeah, life sucks. Sometimes it will suck more. We don't know if it will ever suck less again.

I dunno, but I'm getting a bit impatient. People have been studying this disease for a long long long time, and we are still left with so many "I don't know"s.AND PLEASE CCSVI trolls, go away. CCSVI isn't an answer either. It helps some, for a time. So do a lot of things. The problem is we still don't know what makes MS get worse and what can make it get better. We don't even know for certain yet what happens during MS.

I know the best and the brightest are working on this. I hope like crazy that the development of various MS registries across the world will help isolate patterns better, and am working hard to ensure the one in Canada is everything it should be.

But it's pretty discouraging when all you get is more and more of answers like this.
Especially when I'm feeling like hell myself, and wish like crazy it would all just go away.

Q : 
I have blurred vision in my left eye. I underwent steroid treatment for 2 weeks, and this relieved the pressure on my eye. My eyesight has improved slightly. Is there an average time frame for the eyesight to return to normal?
A : 
MS relapses often affect the vision in 1 eye – called an optic neuritis. It is an inflammatory attack on the optic nerve that transmits visual information to the brain.

High dose steroids are often used in attacks of optic neuritis and other MS relapses. The use of steroids shortens the duration of an MS attack, but does not improve the recovery from the attack. So, neurologists often use steroids if something important like the vision is affected, or if a person with MS is unable to function because of the attack.

Relapses can last for days to weeks to months. The recovery time for a relapse (including optic neuritis attacks) is totally variable. It could take up to 1 year to recover from the relapse. However, some people never recover completely from their attacks – sometimes the myelin (covering of the optic nerve) doesn’t repair itself as well as it was before. Then, they are left with “residual deficit” from the attack, and may never see as well out of the eye as before.

The fact that you have had some recovery is reassuring. But you may not recover your vision in that eye completely – it is still too early to tell. There are no other treatments other than time at this point to treat the optic neuritis attack.

Oh CCSVI - why won't you die???? Maybe if we inject you with stem cells....

Every once and awhile, some search engine finds my blog and I get dive bombed by CCSVI protagonists. This time I also got messages from those recommending stem cell transfusions. Which, I must quickly add, have even less science support than CCSVI does, and which have been tied to rather severe side effects, unlike CCSVI overall (though don't get me started about stenting, which seems to have a shockingly high fatality rate, or the rate of restenosing, which also seems unacceptably high)
Strangely, these dive bombings come from places where neither procedure is allowed on the countries' own people.

What does that tell us?

I dunno, but my "sucker alert" becomes activated. You know - that little beeping sound that tells you there are people out there seeking to take advantage of desperate folks with deep pockets - or worse still, desperate folks with shallow pockets, who go broke trying to cure this dratted disorienting disabling disease.

Now, I can understand the desperate people. I've been there. Heck, I already have my suicide plan in place and review it regularly. Not for use now, I add - heck, I can't even decide if I should get rid of my dog. No, it's for later. Just in case.

I don't understand the people on the other side. The ones who seem willing to rip off sick people for unproven and even dangerous therapies (by this I mean stem cell treatments and stenting).

The pro-CCSVI people go on about how big pharma loves we MS endurers cos they make tons of money off of us. Well, follow the money, people. Look at what CCSVI has brought providers. Look at what repeated treatments bring them. Look at how they treat and then send any complications back home where they don't have to pay the costs. Just saying'.

I know, some people say they've had wonderful results from CCSVI. And they may well have. God love 'em. And I'm happy for them. I'm less happy about the paranoid rantings against anyone who raises a question about the procedure - that just makes we MS people sound like crazy people and I have had my care suffer because of this.

Me, I'm waiting for the science. And yes, each and every day I lose a bit. Like sands through an hourglass, as the old soap used to say, my abilities slip endlessly through the narrow neck of no return. I exercise my body and my mind in an attempt to stall the flow. I take my medicines like a good patient, most of the time. But I'm not a pawn of big pharma and I fight taking any extra meds. I do my research and am glad I took the time to study nursing and epidemiology and health policy so that I can, in fact, usually understand what I am reading.

I know the tipping point may be just around the corner, where I can no longer walk dependably. But it's not intolerable yet. I am alone, so must learn to be dependent, and this is killing my soul. Or making it grow. I haven't figured that part out yet.

I'm not yet willing to give some manipulative money grubbing individual my carefully saved thousands of dollars for a treatment that may well not work, only to be left with not enough money to afford the wheelchair I will now need. I've seen far too much of that out there, and it breaks my heart.

If I do eventually succumb to temptation and try out CCSVI, there's no way I'd agree to stents. There's nothing good to say about them.

And I damn well will not give my money to someone who plans to inject me with stem cells - those cells that can turn into ANYTHING and that don't show any promise unless you actually kill off all the regular immune system in your body. Even then, the risk of death is high high high.

Listen to your sucker alert, will you? Let's stay safe out there.