Tuesday, November 01, 2011

Out of Hybernation CCSVI Rant

I haven't done a lot of research about CCSVI but I have certainly been inundated with "testimonials" from believers in the MS community. I have to say that this is the first one that seems sane and balanced to me

I'm glad that Montel Williams and others are getting relief from some of their symptoms with this procedure and I'm incredibly grateful that my symptoms are so minor that I would never consider surgery on my jugular vein...at least not yet.  However, words like "miracle" and "liberation" scare the crap out of me and set off my bullshit meter.

For me, holistic is the way to go. Eastern medicine, western medicine, nutrition, meditation, yoga...whatever works. And if CCSVI works for you, that's fantastic but PLEASE don't tell everyone that it's the only answer and that they are fools for trying some of the other treatment options.

Let's keep supporting each other in our variety of approaches to living with MS and protecting each other from unscrupulous doctors who give false hope of "miracles" for the right price. Let's keep working/praying for a cure for MS.


  1. P.S. I thought, since I'm commenting on a specific treatment, I should tell you some specifics about what I do and don't do to treat my MS. I have seen improvement in my energy and even my vision since I gave up gluten about 6 months ago. This dietary change is in addition to giving up dairy 10 years ago, and limiting red meat, pork, and fried foods years after I was diagnosed in 07. I am not a neurologist or even a nutritionist so I will not advise you to make these changes. I will just tell you that it works for me. I also try to do yoga (I know, try is a lie) and power walk every day (that I actually follow through on most days).

    In terms of what I DON'T do, I try to reduce stress and I also gave up my injectable disease modifying drug, Copaxone (without my neurologist's recommendation or even knowledge) last spring when I got tired of the injection site swelling and bruising (some of it permanent). This may seem crazy but I have a plan. I got my last MRI series a month ago and if there is no increased MS activity or lesions when my neurologist reads it at my December appointment, I will let the doctor know that I am not going back on the meds. And, if there IS increased activity, I will insist that we try one of the oral meds or even a weekly (instead of daily) injection.

    How about you? How do you treat your MS?

  2. I have taken the advise of my neurologist and I do the following:

    1) Copaxone - but only every second day and I only shoot in my belly and hips.

    2) 5,000 IU of vitamin D daily.

    3) Walk every single day. Sometimes far sometimes short, but for at least 15 minutes.

    4) I am learning to run. I go to learn to run classes weekly and attempt a Couchto5K like program three other days a week. I'm up to running as fast as I can for 2 minutes at a time now.

    As a side note, my neurologist told me that there are only three things proven to help slow disability in people with MS:

    Not smoking, high doses of vitamin D and daily moderate exercise. So that's what I do.

  3. Thanks, Lori, for sharing your treatment plan and reminding me about the Vitamin D! Lots of research shows that most people with MS have a Vitamin D deficiency. Like you, I take 5,000 mg per day and I don't smoke. In my case, because I'm a recovering alcoholic and addict, I don't drink or take recreational drugs, either.

    I also meditate daily and consider myself a spiritual person (i.e., I believe in a power greater than myself).

    I have also received Reiki treatments occasionally and learned to do self Reiki.

  4. Way behind on my blog-surfing - but I have been doing some nutritional research (on me, myself, & I) - of course I don't have MS but I DO have medullary thyroid carcinoma & what I think is a mild to moderate gluten hypersensitivity...
    Even the modest changes I have made seem to be beneficial - & here's another vote for the power of yoga! My inconsistent practice is nonetheless very helpful.