Life with MS & EDS

December 20, 2009

Sums up my feelings about CCSVI

Filed under: Uncategorized — by mseds @ 9:00 pm
Tags: , , ,

An article written by Dr. Ashton Embry, “Hope and Elation – Frustration and Anger – Fear and Loathing: The Contrasting Emotional Responses to the Revolutionary Discoveries in MS Made by Dr Zamboni” so completely sums up my feelings about CCSVI.

When I first heard of this breakthrough I was over the moon!  A discovery of this magnitude was beyond comprehension.  I was elated.  Within a couple of weeks, my happiness turned to frustration.  Dr. Specialist called this “too soon for prime time” and I wasn’t even about to ask Dr. Generalist about this (by the way, I’m replacing him and will start seeing a new generalist in February!)  I’d asked every person I know of in the medical community or who was related to someone in the medical world if they knew of someone, anyone (!) who would do this scan for me.  It’s been a month of searching and I cannot find anyone to talk to.

I’ve pondered doing cold-calls to cardiologists and vascular specialists, but if I can’t get anywhere with people I know, how should I expect strangers to jump on board?  I feel like I’d be setting myself up for even greater disappointment.

Fear and loathing seem a bit extreme, but I am certainly growing more and more angry about the lack of response from the US media and from the doctors who are supposed to be treating me with my best interest in mind.  I’ve grown very suspicious of everyone’s motives.  Dr. Embry captures my thoughts on this exactly.  This is such a radical change that it’s no surprise neurologists are responding the way that they are.  It’s frustrating at best, but slipping quickly towards infuriating!

I remain hopeful that this breakthrough will actually break through and that those of us who want to have the scan will be allowed to and that there will be enough doctors out there willing and able to do the scans.  I remain hopeful that research funding will be available to determine the best way to unclog our blocked veins.  I’m optimistic that this will change the way in which MS is managed with medication, but not 100% sure we’ll all be able to stop taking our current medications.  Much more research needs to be done to find out the affect of iron already in our central nervous system.  Perhaps a whole new line of medications and treatments will develop that focuses on how to deal with the iron.

I guess I do remain hopeful, but that’s just my nature.  I’m still pretty darn angry and frustrated!



  1. I feel the same way. I feel like my neuro is trying to get me on Rebif because maybe there is some advantage for them to have me on Rebif. I don’t know. Please, please don’t tell us that we must accept that a possible path to relief or a cure is all about money and prestige. This breakthrough is going to be attacked, hushed up, slowed to a crawl, invalidated and pooh-poohed because it’s all about money? Angry, frustrated,yes and deeply saddened and disgusted.

    Comment by karen — December 21, 2009 @ 11:16 pm

  2. Doesn’t it stink to have to second guess whether their decisions are being made based on profit or our well-being? My husband and I had the same suspicion when I was asked to switch to Rebif.

    Comment by mseds — December 22, 2009 @ 10:58 am

  3. Yes I felt like they were pushing the Rebif. I told the neuro that I would look at taking it if I could just get the EDS issues addressed. That is my main focus, to figure out a better way to manage the EDS. All I get from the doctor sounds like an article in a women’s magazine….yoga, stress management, no smoking, eat right, exercise blah blah blah and so what if you have lived a whole life doing all those things? There needs to be more that I can do than look to a lifetime of this slippage and pain and not sleeping well. Glad to hear your husband seems like he is intuitive about your treatment, too. Bet he’s a gem. My husband’s my rock.

    Comment by karen — December 22, 2009 @ 9:45 pm

  4. I am trying to post helpful ideas to those who have to wait for the procedure. Thins you can do to get ready, find a diagnostic docotor, and my own progress reports after having the procedure doen at Stanford. On the bright side, when you do get the procedure, it won’t be as scary or experimental as what the early patients had.

    Comment by SammyJo — January 10, 2010 @ 7:26 pm

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