CCSVI treatment still "doesn't work"

I came across a link purporting that there have been 30,000 unnecessary surgeries and millions and millions of diverted funding only to find CCSVI treatment doesn't work. Again.

While I agree that much of the media conflates the concept of this as causation, come on. Studies that use 19 people? Studies that don't use Doppler? If you're trying to disprove the entire idea that blood flow has something to do with MS, at least do it with studies using, oh, I don't know, more than 20 people!

In my admittedly ridiculously non-medical opinion, the results from all the studies since 2009 put CCSVI in the same light as many other factors associated with MS - geography, potential genetic markers, vitamin D levels, exposure to metals, exposure to viruses. Mind you, we see varying degrees of the same "factors" in healthy controls, but for some reason they're higher in pwMS.

Do I flat out believe that CCSVI is the mainspring of MS? No. I'd love to believe we've found a cause, but I personally think it's multifactorial because, well, we are incredibly complex critters! But the research since 2009 has not shown one way or the other that abnormal blood flow does or does not have a hand in disease emergence or progression. To me, that's worth investigating.

This area of research is heavily linked to products like the new, highly touted BG-12 and is the target of the Wahls diet. It's why Biogen compared their BG-12 (now named Tecfidera) results with Protandim in a study - yes the product endorsed by the ever-young Donny Osmond. Protandim won, by the way, but I'm not here to cast doubt on Tecfidera, I truly believe it can have a huge impact in how "we" approach MS treatments. Abnormal venous blood flow is a plausible explanation for poor endothelial health [shown in McQuaid's The effects of blood-brain barrier disruption on glial cell function in multiple sclerosis, 2nd Neuroscience Ireland Conference. 37: 329-331 and even as far back as the 1990 study on the breakdown of the blood brain barrier by Kermode].

Wahls might call it "minding your mitochondria" and many of those leading the CCSVI charge might speculate about blood flow and its effect on endothelial health, but it's all one and the same, isn't it? People with MS have higher levels of oxidative stress. You fight oxidative stress by quenching free radicals. On the Wahls diet you get an abundance of free radicals to battle oxidative stress. The diet also rules out things that hurt your endothelium by eradicating one's consumption of processed foods. This idea is also why there is ongoing research into treating MS by addressing infections like chlamydia pneumonia - acute bacterial infections become chronic with weakened endothelial health.

By Biogen's own admission, BG-12's mechanism isn't totally clear (nor is the complete mechanism of many MS drugs, take Avonex, for example), but at the very least, it has anti-oxidant properties that block some of the molecules that are known to inhibit mitochondrial function (that in turn exhausts cell energy and can eventually lead to nerve damage).

CCSVI research is no different. No, wait, it is. It's totally different in that media pushed it too far in the beginning by using ridiculous claims. Cure! Causation! While the effects of CCSVI on endothelial function are completely conjectural, enough researchers have confidence that there may be a link between abnormal blood flow caused by CCSVI and endothelial stress.

Does that mean the outrageous claims of cure and causation are justified? No. They're shameful. But it does suggest that blood flow is a very valid area of research in MS. I'd rather my funding go to this type of research than merely pushing all of my coins into the purses of pharmaceutical companies.

(no idea what's up with this formatting)

In the news - Chris Wright

And on the subject of misconceptions…

ESPN ran this article this week - the first ever NBA player with MS. Awesome! Look, we can be athletes too! [sorry, slight facetiousness there] 

As great as that is, there are a few things in this article that irk me.

Mavs president of basketball operations Donnie Nelson said. "He's a high-character, tough competitor who's had to consistently overcome personal challenges like MS to put himself in this position. The physical obstacles he's had to contend with are significant."

No, just no. MS is not a personal challenge. We don't get to "take on" MS and overcome it. This isn't some tale with a scary dragon and a hero. No doubt he's had to contend with physical obstacles. I can't even imagine how his body is dealing with the incredible heat it must be enduring*. He's in remission. I hope he stays there. If not, I hope he's in the NBA long enough to make enough money to make life with MS a little easier. But to say he has overcome MS is incredibly misleading and naive.

Added coach Rick Carlisle… "It shows determination and an element of resourcefulness, which I think is a very important quality on any NBA team…"

WHAT? He's resourceful because his body went into remission? How about taking some of the pressure off this guy? Holy crap. What happens if he relapses? Is he less resourceful then? Less of an inspiration?

There are other things here that bug me. I find the idea of someone with MS doing something fantastic and being deemed an inspiration condescending. I have a very rich, regular life. I get it, though. Aim for success, regardless of your physical state. Just know that for many with MS, success is getting out of bed, tying shoes, making dinner - really basic stuff. That said, congrats to Chris Wright for making the NBA. 


*Uhthoff's phenomenon, a worsening of neurological symptoms that's a manifestation of heat intolerance, is incredibly common in people with MS. Just try to have a sensible conversation with me after I have a hot shower, blow dry my hair and attempt to use a flat iron. 

And now I can breathe

I just checked the mail and found an envelope from Blue Cross addressed to me. Gulp.

You see, every year I have to have my MS medication, Avonex, approved by insurance. It's a special authorization prescription, meaning every year I have to fill in a form, send it to my neurologist to complete, and then send it on to the insurance company. Then I wait. Fingers crossed. They often reply suggesting I try the provincial prescription system for assistance first, but I don't meet the criteria. You have to be under the poverty line to get assistance. Knowing that, I still have to apply, get rejected (all by MAIL, which can take weeks), and then send proof of that rejection to the insurance company. Then I wait some more because the insurance company also sends verification only by mail. 

Timing this takes precision since I only ever have 4 weeks worth of Avonex at a time.

Blue Cross has said no in the past. [cue the wailing and gnashing of teeth] Paying for Avonex is no small feat. It's ~$1800 for a monthly prescription. I have paid out of pocket in the past and it's not something I'd be able to sustain long term. I suppose if I tried, I'd probably eventually hit the poverty line I'd need to qualify for provincial aid. Is that a silver lining?

So, back to my envelope, I am approved for yet another year. When I read the letter I felt a wave of relief followed by anger. I hate feeling this way every year. Resentment. I hate feeling like I am part of a faceless, nameless system and someone else controls the fate of my health coverage. Someone I never even talk to.

But for now, I am thankful. Another year of peace.

Yes. Yes, I can.

I was getting blood drawn today (routine liver check) - unfortunately it's not as fun as getting one's picture drawn, but it's not all that bad - and the nurse struck up an odd little conversation.

There's nothing on my form to suggest I have MS and I've never met her before, but she randomly started telling me how she was in a great mood today because she was told she doesn't have MS. I...wasn't sure what to say. I congratulated her on her good news and she kept talking, telling me how she'd "have died" if it had turned out to be MS (you're gonna die some day anyway, hon). She had been having numb feet with painful pins and needles for weeks and her doc ordered a head MRI. It showed little spots but not lesions (not sure what she meant by that...if they were dilated Virchow-Robin spaces or what), so she got a clean bill of health. The numbness went away on its own.

She told me all this as she drew blood and then turned to me and asked, "Can you imagine being told you have MS? I don't know if I'd even be able to work". I did what felt like the right thing and let it go without opening up about MS. There's a difference between raising awareness or clarifying misconception and making someone feel like an ass.

I'm glad she doesn't have MS. I'm also glad she has great technique because she didn't even have to work to find my thread-like veins. 

I'm not sure what to make of this encounter. There's no moral or lesson here. Just a funny little happenstance. The people that you meet when you're walkin' down the street...

What the heck do I eat?

Maybe I'll follow the Swank Diet, or I've heard the Wahls Diet is nearly a cure, but what about paleo and primal? Should I check out the "Best Bet" diet (shout out to the fabulous Ashton Embry)? Do I go low fat? Low carb? No dairy? Low sodium? Gluten-free? Green tea? What  the heck is an omega 3? YOU HAVE TO BE FRICKEN' KIDDING ME!

Okay, healthy eating is important for everyone. Not exactly news. But when you have a chronic illness, it seems to take a little more of centre stage.

So where do you start? Well, it helps (?) to know that doctors don't even agree on what's good for people with MS. My neurologist recommended I up my vitamin D intake a few years back, so I supplement 3500 IU a day. Some articles suggest supplementing with vitamin D can throw your system out of whack. [Note: vitamin D toxicity is extreeeemely rare]

I did so much reading when I was first diagnosed that I made a list of anti-inflammatory snacks and supplements. Seriously. Cherries, ginger, omega-3 fatty acids like fish oil or flax seed (or more accessible than flax, chia), fruits and veg (for delightful plant nutrients called phytochemicals), except nightshades like tomatoes and potatoes (I'm from Newfoundland, you just try to tell me not to eat a potato). I even printed a little list to carry with me to the grocery store. Now, don't get me wrong, inflammation is the beast I try to tame, but no one needs to obsess over a list of anti-inflammatories. 

To me, it's simple. 

If you don't eat vegetables, eat vegetables. If you only eat potatoes, try something green or orange on the side. If you don't like vegetables blend them into smoothies, pasta sauces, meat patties…just eat them.

If you eat a lot of processed food, don't.

If you drink a lot, don't.

If you eat a lot of sugar, you guessed it…don't.

If you eat meat, try to balance with a lot of vegetables, and make it grass fed. 

Some of y'all thought I was gonna go all vegetarian on ya' there, didn't you? :)

Carbs aren't going to kill you, just make most of them complex carbs.

Is there anything harmful about the Swank diet? No. Will getting a massive amount of antioxidants as per the Wahls diet do you good? Of course it will. People with MS have higher levels of oxidative stress than the norm, so the more antioxidants we consume (found in those colourful stores of veggies and fruits), the less damage done to our bodies by free radicals. That said, if you don't have MS, the same is true. Veggies are good for you. Your mom wasn't lying. 

Does paleo or primal work? Possibly. Does low carb have benefit? Of course. As does eating low sodium. 

This is what I do:

• I don't eat meat. That's a personal choice and has little to do with MS. 
• I try to never say no to vegetables of any sort (I'm working on onions and green pepper, but I don't think I can get there with onion and can only eat it super diced or blended).
• I track my calories. Again, personal choice and not for everyone, but it helps me manage meals and put healthy portions into perspective. If I stop tracking, my metabolism goes haywire. When I started tracking a few years ago, I was shocked to find that I tend to not eat enough calories rather than too many.
• I find balance. Do I eat processed crap sometimes? Yes! Do I eat and enjoy salads and healthy, well-balanced meals more often than I eat that stuff? Absolutely.
• I try to limit my glucose simple sugar intake because it is wicked hard on endothelial health and bumps up oxidative stress. This one's the kicker for me because my go to "feel good" food growing up was candy and pop. Soda's not a problem for me to ignore. Something in me whimpers as I go by the candy aisle.
• I drink beer and wine (funny on the heels of that last one, maybe). Maybe not as much as I once did, but that seems to be more of an age decision than an MS one. 
• If I have "bad" food it doesn't plague me. I'm not tormented by visions of Doritos.

In supplements, I take milk thistle for my liver health - it has liver-protecting silymarin. I drink a boatload of green tea (ECGC…plus deliciousness, why not?). I take a vegetarian multivitamin to make sure I get sufficient B12 and magnesium. I still take the vitamin D supplements and I try to let myself get a little sun whenever it appears. I take flax seed oil for the anti-inflammatory properties and would love to find relatively inexpensive chia oil. 

None of this is all that whacky or out there...unless you love steak and just can't fathom being vegetarian. Actually, if you try the Wahls diet, you'll be pleased to find that Terry Wahls recommends meat intake and thinks vegetarianism is a no-no. 

For those with MS, do some research. Food has impact. We are so very careful over what drug regimens we choose, it's a little unthinkable not to try to control as much of MS as we can and give our food some thought too.

Breathe a little bliss

Ignorance is bliss. 

Over the past few years that phrase has been on replay in my mind. I've been helping moderate an MS forum and the amount of information that some people with MS have researched is astounding. I like to think that my growing pile of research papers into diet, supplements, exercise, vascular issues and the like is keeping me informed, but egads, some people live and breathe MS research. They can quote published articles, right down to the semi-colon. They can tell you which countries have approved Sativex and what drugs cause heart palpitations.

And I wonder why I can't be that person. Or, maybe I know why. Maybe I'm afraid to take on MS as a hobby too. Maybe I'll find things that terrify me…god knows that has happened on more than one occasion. Maybe I'll find statistics I'm not aware of. Maybe I'll lose myself.

See, in all of this, I've maintained that MS is a part of me. Like the extra 10 lbs I picked up last Fall and have yet to shed. Not welcome, but largely ignored.

I’ll admit that I occasionally probe libraries for research papers and have amassed everything from the therapeutic potential of NrF2 activation and the effects of dimethyl fumarate on neuroprotection and immunomodulation (say that 5 times fast) to thoughts on MS being a vascular disease or MS improvement following removal of heavy metal intoxication. I'm interested in MS, but my reading isn't a daily thing. I'll still pick up something from a Giller or Booker Prize lists before pages and pages of abstracts. I follow Terry Wahls, the MS Society, and CCSVI groups on Facebook but I don't pore over every message or post. I want to be informed, but I also want to have a large, rich life outside of MS. I'm afraid that constant research would bury the person I know myself as.

It seems like today's world offers so much by way of technology that it's a double-edged sword. We are more connected, but more isolated. We can fact check our mechanics, doctors, lawyers, and even car sales people until the cows come home. We are armchair experts in every field as long as there's power and cell coverage. I love technology. I love that I can open my laptop and play Scrabble with my mom who lives many miles away. But I hope there's a point where people can step back and step outdoors. Breathe the fresh air. Let a little ignorance flow over them.

P.S. Yes, I've been away from here a long time. You were warned there'd be long stretches of nothing. :)

P.P.S. Nothing new on the MS front for me. I feel well. Can someone convince me to walk another half marathon so I can get my excess 10 lbs ready for a huge hike this Fall? Someone? Anyone?

Stranger Feet, the sequel

This post is potentially upsetting to those close to me and to those of you have MS and are newly diagnosed. Consider sitting this one out.

Saturday was a great day - had a little doggy hike, supper with friends, and a keg party fundraiser at a pub. 

And it all torpedoed in an MS moment. At the bar, I went to the washroom - wait, to clarify... granted, I had had a number of frosty beverages, but I was by no means completely sozzled. I like that warm, tipsy feeling, but don't like the loss of control that comes with drinking too much, so I try to moderate myself. So, I went off to the washroom and took a step from the stall towards the sink and Left Foot sneered at me, "You want to walk forwards, eh?" and it yanked me sideways. Right Foot wasn't much help. It shuffled off a little waywardly and then ignored me. Stranger feet had returned.

Fuck. (sorry, mom)

There was no one around, so I stayed there a minute, composing myself. I knew I hadn't had all that much to drink and my feet were telling me this wasn't from the booze. MS moments aren't all that common for me and when they happen, they take some emotional grappling. After a minute or two, I told Left Foot that I was going the hell home, with its cooperation or not. So, my feet got their act together somewhat and I was able to take a few steps. I ambled back and forth in the washroom until I was fairly certain I'd not fall down, and then headed back outside. Nancy had noticed me missing for a while and was on her way to see if I was okay. Left Foot decided to take yet another snooze, no matter what signals my brain were trying to send to it. I told Nance I had to leave. My brain to foot transmission was sincerely messed up. So, without a word to a small group of friends, we left the pub and hit the sidewalk. Each step a misguided, misdirected crapshoot.

By the time we made it to the sidewalk, I had started crying. Overwhelmed. A random, friendly drunk man stopped to make sure everything was okay. Not sure what he thought was wrong, but it took a little convincing for him to keep walking. I love Atlantic Canada. Even the drunk people are polite.

We grabbed a cab home and I was pretty much a sobbing mess by the time we stopped outside our doorstep. I was crushed. 

See, not being able to walk a straight line from a few too many beers? Well, that I can handle. Not being able to walk a straight line nor predict which direction your foot will move? Incredibly unsettling. Left Foot was a wobbling, lurching entity every third or fourth step.

Thankfully, Nance helped me inside and sat with me while I blubbered and snivelled. Grieving normalcy begins again with every big MS moment - never the same twice, but the emotion has to be processed anew each time. I'd love to be able to tell people that you get used to it, but you just don't. The stairs were too daunting, so I bunked on the couch for the night. I laid awake, contemplating the unpredictability of MS for a while, finally lulled to sleep by the heavy purring against my side. 

I woke today with a tiny headache. No stranger feet. Dark emotional cloud.

Lesson learned: If I say the phrase "I am so tired" BEFORE heading out somewhere for the night, I should 1. stay home, or 2. nap, ffs. I need to respect fatigue and the results tiredness can wield. This isn't the first time that being tired has brought a sticky onslaught of symptoms.

Had a sea glass picking beach stroll with friends today to take my mind off of my body. Nothing calms me like being on a beach. I can't remember a time when that wasn't the way.

In much better news, it's 10 weeks until my very dear friend visits from the other side of the Atlantic. Lots of fun planned. With naps.