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!

CCSVI: My Three Month Checkup

It’s been three months since my “Liberation Treatment” and today was my Doppler sono and consultation with Dr. Mehta in Albany, NY.  The sonogram showed much improved blood flow in the internal jugular veins since my baseline study last August (before treatment).  Dr. Mehta said that there is no indication of reflux or restenosis!  This good news is tempered with the fact that one section of my left IJ is still 100% occluded–something we found out in November during the venogram.  But the blood is flowing through collateral veins which have taken it upon themselves to reroute the flow around the blockage, so IT’S ALL GOOD!  [Remember that these kind of blockages are not from cholesterol or fatty deposits like you might have in arteries, but are from webbings or scar tissue—reasons unknown.] This “dead area” might have to be stented or perhaps bypassed (surgery) at a later time IF my old symptoms (like balance issues, etc) return.

I had a walking test today, too; my score (walking speed) improved by 25%.  I filled out another Quality of Life Survey with a million questions about symptoms, emotions, and even sexual health, pre and post treatments. I was encouraged by the nurse practitioner to see a physical therapist for conditioning and muscle strengthening, and just so happen to have my appointment with the very talented therapist Dana Greene of Summit PT next week.  I will go back for another check-up in three months.

My plan for the next phase of healing is manifold and really sounds like New Year’s resolutions:

1. Eat well–clean food, avoid preservatives, make nutritionally solid choices, local and organic when possible
2. Take supplements and etc–fish oil, Vit D, B-complex, L-arginine,  an aspirin a day
3. Lose a bit of weight/move more!
4. Be gentler to myself and others.

All in all, it was a very good day.