Friday, May 9, 2008

new meds

From: Janet

I hope the new med you have is helpful. I definitely want to read about it. Within the last 10 years I have been told that what I have is not MS because the lesions on my brain are not significant. I have been diagnosed with chronic fatigue and fibromyalgia and the new thinking on fibromy is that it is not muscular, but neurological. I have been lucky so far in regards to not getting a dx of MS. But need to get checked again because balance and dropping things seem to be getting worse. Again, I hope that this med works out for you.

Thanks. I believe LDN (low-dose naltrexone) is working for me. I'm not suddenly miraculously cured--there's a fair amount of damage to my spinal cord that is never going to get better--but I feel as though I've stopped getting worse, or at least that I'm getting worse much more slowly.

I have much, much more energy than I had a year ago. I can exercise, and work, and have a life (whereas I used to have to prioritise rigorously). I can't tell you how much difference that makes. I wake up smiling, looking forward to the day, instead of with a groan, and an o god, how am I going to cope?

I think a lot of autoimmune disease (AID) is stoppable and reversible--at least in the early stages. In my opinion (everyone's mileage varies), it's a matter of getting out from under the stress, getting enough sleep, and being very attentive to diet (particularly vitamin D, B12, omega-3 oils and suchlike).

I empathise with the diagnosis dance. I was ill for more than four years before anyone was willing to give me the MS label. Even now, the lesions on my brain are pretty dubious--so small that they may or may not be real. But my spine is definitely splotchy (sigh). Doctors, frankly, don't know a lot about this stuff; no one does. Anyway, I hope you're doing okay. I hope you get things sorted. Feel free to ask more questions if you think I can help.

This blog has moved. My blog now lives here: