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.

luka309 luka309
46-50, M
4 Responses Jul 9, 2009

The neurologist that diagnosed my wife is an a$$. Even recommended not to treat her as her symptoms were so slight. We've since found a wonderful doctor. Never in a hurry, easy to talk to, easy to get in touch with, everything you want in a dr. I think confidence in your physicians is paramount in your treatment. Good luck to you.

Thank-you. mr246 and Reascentia. The beach works wonders. It's a challenge that keeps on giving way to more. I recently got a new neurologist and am going through some new tests. Today I got tested for CADASIL--mimics MS and is scary to even consider.<br />
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Thanks again for the encouraging words. I hope your MS is being kind to you.

It is good you left that clinic. I think that maybe the shot were responsible for you getting a little worse. I am just newly diagnosed but from reading and researching some ot the medications it seems as if that people do have a reaction to certain ones and some people don't respond any with certain ones. So its hard and maybe a struggle.. but im glad you left that clinic and keep searching.. I hope you continue to stay positive.. Thats the most important thing im learning about this disease. I hope you find treatment that works for you. Hugs

Some Dr are ego driven total losers. Theres some great ones too.keep looking. In the meantime go to the beach when you can and breath in the fresh air. God bless you.