CCSVI Update: 6 months post-liberation

On a very rainy, misty, foggy morning this week, I made my way to Albany to have my six-month Doppler scan and consultation with Dr. Mehta. The scan showed a bit of slowing of the blood flow in the right internal jugular vein, and there was a bit of positional reduction of blood flow, too.  The kind doctor, who must realize how my mind works by now, declined to tell me which vein or which position was compromised in this second issue.  He believes that it might be an abnormal normality (or is it a normal abnormality?) for many people, so why bother with information that might lead me to hold my head a certain way (oh, and I would) or cause me to fret continuously (and I really would!)?  I like that he used himself as an example—that he, if scanned, could possibly have this same glitch in his  neck veins.  Why that makes me feel better, I don’t know; but it does!

The plan now is not to return until November unless I have a change in symptoms.  This little direction spurred a whole conversation, since the symptomology of CCSVI is what?  To me, CCSVI is only relative to the symptoms of my so-called multiple sclerosis.  It hangs like a hat on the peg of my MS!  Maybe the two concerns will show themselves separately and I will be able to look back over my health history and see the distinction. Or see how the MS label was given to me without a further check of the vascular issues I had prior to the EEGs, spinal tap and MRIs.   As the medical community debates  and researchers struggle with the correlation of the two disease entities (perhaps more, given the breadth of MS types), it all comes down to THIS:  There is an ongoing battle to feel better and improve the quality of life, day-by-day.

How do YOU fight the battle?

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2 thoughts on “CCSVI Update: 6 months post-liberation

  1. Nicely put . . . as always, Donna. I fight in varying ways according to my physical, emotional, spiritual state at the moment. At times I am in full attack, sometimes I am in the tent with the generals (doctors, or other providers) planning my next rally, sometimes I am in retreat, running for the hills. This is an apt metaphor – thank you for bringing it to mind because this is all very confusing to friends, family, etc. because they feel obliged to ask the obligatory “How are you?” and depending on whether I feel obliged to be truthful or blow it off that day or which phase I am in will determine what type of answer they will get those various times. Leading them from varying month to varying month (because a rare few keep up) to think I am fickly, faking, or merely, fanatical. When in fact, I am sick with an illness that remains illusive to doctors and myself both – so it is more about us making tiny steps together or apart or me finding someone who can take me that next step that really counts.

    Laurie

    • So we are looking for the key to stabilizing our physical, emotional and spiritual states so we can be fully present at our own battles, then. At the very least, if we could have strings of good days we might be able to deduce what knocks us out of whack. Until our revelations come, we should stockpile answers for inquiring minds who think they are being polite by asking how we are. My friend Regina says, “Well, I do have my condition….”, and the exaggerated trailing off of her voice gives the askers ample time to change the subject or disappear.

      Wishing you new insight and answers as you battle your ‘condition’,
      Donna

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