I'm Not Waving, I'm Drowning.
19 years and counting. It's progressive MS and I'm literally wasting away. January I started a new infusion treatment at a San Francisco MS Clinic (My first time at this clinic). Since mid-April I've lost about half my muscle mass and two days ago I was taken off the infusions for fear they were responsible for the wasting or myopathy (heart included), bone issues, drop in body temp & BP . . . . I'm now not only worried about the disease but also the side effects of the treatment and the nature of this clinic's care. I've been extremely lucky with a slow progression of the disease's physical symptoms, and wether it's the disease or the treatment, it finally seems to be going after my body and bone.
I have left the SF MS Clinic and am back with my Berkeley neurologist and GP. This clinic was a tragic and costly mistake that I fear my body and mind will never fully recover from. The Clinic physician actually took me off my interferon which may have been mitigating some of the MS progression and flares and put me on a radical treatment with no monitoring other than the usual over-worked infusion nurse where my comments and concerns were treated with a kind and casual politeness. Seems like genuine care, physician follow-up and accountability were callously dismissed or just lost in the crowd--what's one patient more or less--how many of us are just left in the wake waving at the beach.