CCSVI: Coming Undone??

I’ve totally enjoyed the resolution of many of my MS symptoms for the past seven  months, but that is changing now. (for about 1 month)  It’s like someone is playing a trick on me, and taking back all the gifts I got for Christmas.  The bone-crushing fatigue is creeping back; I started taking two Provigils a day without much relief. My double vision has returned–no pill for that but I should probably get some Astaxanthin. That’s IF I remember to go out and get some or ask my right-hand man (Vinny) to do it. Memory problems are again a big issue, so I probably will forget to ask.  My balance is wobbly again, and of course, my gait has widened.  My heat intolerance is as bad as it ever was.  But the saddest thing for me  is the return of my st-tt-t-tut-ttering and those dreadful long………………………………… pauses when I speak. I know how upsetting it is to my family when it happens and then it bothers me all the more.  My speech was very bad for a few days, like the start of a doozy of an exacerbation. I dreaded calling the neurologist,  because I’d probably be convinced to do a round of  IV steroids. ( and I don’t want to do that again).  I did, however, try a supplement called Inflazyme, and seemed to be helped by that. I also called the vascular doctor in Albany and will see him in 10 days, get another scan, and decide the next step.  To be honest, I’ve been very bummed out about this theft of my abilities, and more Eeyore-like than I care to admit.  I mean, I have/had plans to have lots of summer fun!!  And I have a huge plan to walk in a marathon relay with my sisters on September 4th!  I don’t know what will happen with that, but this I know: all of my MS symptoms practically disappeared when my neck veins were cleared, so this is probably a ‘restenosis’ or renarrowing of the fixed veins.   I will go and have them unkinked or whatever again.  And I will  hope for a longer-lasting relief from the symptoms next time.

As for this blog…it’s good to be back!


2 thoughts on “CCSVI: Coming Undone??

  1. Wow. I am saddened at the return of your symptoms, Donna. I can’t help but to say I am intrigued as a researcher as to what is going on. I am glad you are keeping your options open. You are one strong lady and I admire you. Thank you for sharing your journey – the sunny days and the cloudy ones too. Whatever you end up choosing – remember that you are the pilot of this journey and you have done at all times what you believe is the best – and that is what counts. No one – not even people with fancy letters after their names 🙂 can know you and your inner workings and desires and intuitions like you can. So no matter the outcome, you have done the right thing for you. Love you, woman!

    • Thanks, Laurie. I’m also intrigued and am looking forward not only to what my doctor surmises, but also to the new information that is coming in from the big CCSVI conference in California. From early reports this weekend, researchers and practitioners are bringing in their information and dots are being connected! I think dots will even appear where no one thought a dot could be! As for me personally, I will keep following my gut but more than that, I’ll keep praying for God’s guidance along the way—each and every step of this journey.

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