Over the last few weeks I've had a few days where I felt tired during the day and had a nap/laydown, even twice one of those days. Now, I know that's a long way off from what it was like before liberation when I had a deep, devastating fatigue that required me to take at least a couple of naps every day, sometimes as many as four in a day. However, for a while the other day I also had a return (for the first time in a year) of that feeling of walking on Jupiter (like huge gravity pulling down on all my limbs). Given the EMMC imaging I had done a few months ago telling me that I still have some indications of CCSVI, I'm beginning to wonder if I might need to be retreated sometime in the near future. After 16 months of living a much better quality of life, I don't want to let things go too far downhill again before doing something about it.
If it does appear that I am restenosing, where should I apply to go to be retested and, if appropriate, treated? Rhode Island, because they're allied with the facility in Bangor? Albany with Dr. Siskin? Somewhere else on the east coast? If anyone out there has advice or can tell me of their experiences, I'd appreciate hearing about it.
Dx SPMS in 2004. Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com