Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Thoughts on Chronic Cerebrospinal Venous Insufficiency
This is an early edition of the Carnival featuring posts related to CCSVI. We will have our regularly scheduled Carnival tomorrow as well. Enjoy the bonus this week!!
Note: The National MS Society presents information regarding CCSVI, including a recording of the webforum held on April 14, 2010 and hosted by NMSS and the American Academy of Neurology, on their website.
by Judy of Peace Be With You
by Judy of Peace Be With You
the latest lightening rod
for strongly held views.
Some want us to sprint.
Others ask moderation.
Patients want relief.
Do we ask too much
of this new experiment?
Let's please find the truth.
by Ginger of CCSVI, Liberation Surgery & Me
Before my liberation treatment I was not able to live in temperatures above 20 degrees Celsius. In fact, temps around 18 were optimum for me. In the late Spring and entire summer I would be a prisoner in my air conditioned home, held hostage by the sun's heat. I would joke to myself that I was like a vampire but the joke just wasn't funny anymore after living like this for the last 10 years. If I exposed my body to any type of heat above 20 degrees I would get extreme pain in my hands, arms, feet and legs. My feet would feel like they were burning and my body would go all tense and tight and I would not be able to walk at all. I would become dizzy and experience vertigo.
Since spring began a few weeks ago and the temperature has started to rise I have been watching myself with great interest as I'm hoping my heat intolerance is gone. I have had hints that it might be gone like when I had a hot bath and was able to clean the tub after. (Usually I felt like a limp piece of spaghetti and had to go directly to bed leaving the tub to cleaned on another day.)
Two days ago I decided to take my dogs to the off leash park with my son Darin and his puppy. It was around 22 degrees Celsius so I was a bit concerned how my body would react. When I started walking in the park my left knee felt like I had a tensor bandage wrapped around it and I thought "Oh God! here it comes!" But then I kept walking and the "hug" went away. I was waiting for the ax to fall but it never did. I was aware of the sun's heat on my skin and the breeze blowing but I had no exacerbations at all!
I was able to walk in the bright heat of the sun with my dogs and my boy like a normal mom. I did not explode into flames like an Anne Rice character. This was the most marvelous feeling and I laughed because for most people it was so mundane and ordinary for them. My right leg and foot are still the weakest links in my recovery and the leg did start to feel slightly burning but that was all. I am hoping that when the temperature really goes up I will be able to withstand the heat and enjoy my summers again.
Goin' the other way on the CCSVI limb
by Doc of The Gimp Chronicles: Shade-Stealing Crips
by Doc of The Gimp Chronicles: Shade-Stealing Crips
I was recently asking some people who know I have MS why certain people reacted as if I had a potentially explosive brain tumor when they heard I have MS. Without hesitation, the response was "they just don't know better."
OK, I can dig that, I guess... because it corresponds with my own lack of overwhelming concern about dying from MS, or disability. I've never really felt like MS would kill me, and I've long been ready to be a fulltime crip. I won't be overly stressed when it happens.
I've had signs and symptoms for at least 3-4 years now, with diagnosis Jan of 2009, but I kind of figured well, can anything be done? It can? Well, let's do it. That is not to say I haven't had bad times and that I won't have more... doesn't mean I enjoyed avonex shots and side effects (which went away), but I just don't have the feeling of MS as a "horrible, disabling, crippling, monstrous" yadayadayada life-sapping badguy. I know I must seem very lucky to some who have MS-- I have insurance, a fanTAStic neuroimmunologist, a working clinical trial, a job, and a genetic predisposition to get things done. I have done about 90% of things I've wanted to (honestly-- i'm just missing the Oscar), and all that is left is to live a good, decent life and create as little terror and pain as possible.
So yeah-- I just am not hopping on the CCSVI bandwagon. There are serious problems in the methodology of research (yeah, I'm a PhD in English, but I read pretty well too). My major surprise is that I didn't really think I'd see a shrill (both ways) medical fad/ cure/ treatment/ whatever it is or might be acted out as they were in the past. Hey, I'm a vegetarian, I like my herbs and adore my teas, but it's not those that turned the Xmas lites off in my brain. Whatever the reason, the clinical trial drug works VERY well in me-- may not in others.
I look at it this way-- I was so ridiculously low risk for MS (not Scandinavian, raised in the sun, not even ONE yeast infection, and a non-environmentally risky job-- but yeah, female), yet my lesion load was so tremendous that it took 8 docs 7 days or so to hesitantly determine what I did NOT have-- by god, SOMEONE would have noticed blood drainage/circulation issues!
And that is how the discussion of CCSVI goes. There is always someone who was cured or will believe themselves to be cured via unorthodox ways-- I swear one person said he was cured by parsley, chorella, and vitamin D. HMM!! Shouldn't the vegetarian have been protected from MS if veggies were the key? Undoubtedly, I'd contracted some invisible yeast infection.... or it's stress... or blocked veins.
I really do hate monolithic arguments. I can understand fear and loathing of MS. I am sure I'm relatively "lucky". I'm even a bit credulous.
But not about MS. And if one more person declares "all docs"/neuros are "in bed with Big Pharma" I'm gonna smack them freakin' silly. With my still-functional right hand, then beat them with my occasionally-needed cane.
Grump. I await some science.
And anyone mention grammar errors are "not supposed to be in English-major blogs!", I will say I'm off duty-- and THEN beat 'em with my cane. Grr.
It is human nature to want a quick solution to our problems – the silver bullet that will make it better. The recent excitement around chronic cerebrospinal venous insufficiency (CCSVI) and “liberation treatment” put me in mind of that fact of life. The reality is that this is a theory and a treatment in the early stages of research, and you need to put your multiple sclerosis into remission NOW.
It has been widely reported – in sometimes breathless, overstated terms – that Dr. Paolo Zamboni of Italy has discovered the cause – and cure – for multiple sclerosis. If only either were true. As well reported by Canada’s National Post, this very preliminary research has been totally blown out of proportion. And if people living with MS line up for unproven surgery, rather than doing what we know we can RIGHT NOW to treat our MS, the results can be harmful.
It is true that Dr. Zamboni has found some support for a hypothesis of a connection between restrictions of cerebral blood flow and multiple sclerosis. And the limited data indicates that there may indeed be a correlation. But it isn’t clear to me whether what he has discovered is a cause of MS, as opposed to be yet another symptom, and this doesn’t point to the silver bullet treatment that many media reports have suggested.
As Dr. Jelinek explains well, this finding isn’t even all that new and in fact was written about by Dr. Swank many years ago in his book. And Dr. Swank’s work, confirmed by Dr. Jelinek, has already given us a treatment plan, albeit not a silver bullet.
The fact is that for us folks with multiple sclerosis, staying well is within our control, but, sorry folks, it takes discipline and a life-long dedication to changing our lifestyle, starting with our diet. Controlling what is put into our bodies is the key to controlling our bodies.
Does that sound like a silver bullet? No, I suppose not. But step back and think about it for a minute. Do you really think surgery (as suggested by Zamboni) is a preferable solution to eating healthy? I suppose there are many who wait for the heart attack and then have angioplasty or stents (or bypass) instead of eating right, but I sure wouldn’t choose that.
And I know that Dr. Swank and Dr. Jelinek’s recommendations sound difficult, if not impossible, when most of us first read them. Take it from me, a man who had no discipline (75 lbs. overweight), it is daunting at the outset. But after 8 months of living on the plan, I feel great, have lost almost 30 lbs. (and counting) and, most importantly, I have learned to love this healthy lifestyle and will never go back.
Do yourself a favor: if you are not a Swanker, commit to trying the plan for 2 months. Really stick with it, see how you feel and see if you really want to go back. The worst that will happen is that you will have a healthy diet for a couple of months. The best that will happen is you will become committed and live a longer, healthier life, with less disease progression. You’ll even help ward off cancer and heart disease (isn’t MS enough for you?)!
This concludes the 62nd 'early' edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on June 3, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 1, 2010.Comments for this post.