3 week post stent update

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby happy_canuck » Sun Nov 29, 2009 1:22 pm


My experience exactly -- "it's all in your mind." I remember how reassured I was when a new neurologist opened his first examination of me with "I want you to know I will believe everything you tell me." Wow! He made the diagnosis (1992) after 3 neuros all said I was healthier than they were.

CCSVI shows us the multi-dimensionality of MS that may explain why some neurologists feel out of their element when confronted with signs that "don't fit" a strictly neurological disease.

~ Sandra
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Postby ozarkcanoer » Sun Nov 29, 2009 2:46 pm

Montana and happy_canuck,

It seems we have a lot in common. I have had the "it's all in my mind" stuff too. I've seen so many psychiatrists and psychologists. The last one told me I have a panic disorder when I described my symptoms. But I have 40 some lesions on my brain and positive O-bands. My neurologist believes me (I think). I wish I had all the money I've poured into the mental health profession, lOL.
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Postby CureIous » Sun Nov 29, 2009 7:26 pm

Montana wrote:I am reminded of the dozens of times over dozens of years that I was told my dizziness, numbness, reactions to heat, weakness, vision problems, etc. were "in your mind." Not until I became paralyzed and was diagnosed with MRI, spinal tap and evoked potentials was I taken seriously...me, a grounded health care professional, was treated like a psychosomatic nutcase. It's been 20 years since my diagnosis, yet recently I had a neurologist tell me that he didn't think I really have MS because, "you are doing too well." He could not see the invisible symptoms hidden behind my smile. I'm sure others have had similar experiences. So, lets not think too much about symptoms considered to be "in your mind" now being relieved by therapy whose results may be "in your mind."

"Hey Jeff, new therapies like this are usually assessed thru double-blind studies to account for the placebo effect. I was wondering if you are at all concerned that your improvements could be due to your mind instead of the treatment. "

Folks, this is not a phantom disease, nor a hyponchondriacal illness. It is real and I am grateful to hear from those of you reporting relief after years of symptoms. I don't need a double-blind study, I know how I feel, I know how my body behaves, I know what is happening in Italy and Poland, Canada and the US and I look to you to hear how I could feel if this treatment moves forward. We must all do our part to make that happen.

Sigh, you are truly after my own heart. It just sucks we can't quantify the little odds and ends in totality that affect us on a neverending basis. Scales of this and that disability cannot possibly encompass all that is involved. I'm reminded when the boss says "do such and such" and if I don't have my trusty notepad to write it down immediately, guess who gets to look like an incompetent employee later on? That's just one TINY example of day to day dealing with this disease. I've had countless examples post-op of exactly the opposite happening so the placebo is working! All hail the placebo! Thank you placebo for a mind that is pinsharp and clear as a bell for once!
Anyways hope this isn't too much thread hijacking, sometimes I forget to check for that, if so I will delete... :) Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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