This is short notice and perhaps someone has already posted about this (I am WAY behind on reading posts this week) but if you are able, try to catch "The Doctors" today on CBS. The theme of the show is How to Prevent a Misdiagnosis and there is a segment on MS. Nancy Davis, the founder of the Center Without Walls foundation for MS research, is interviewed about her experience being diagnosed many years ago before DMD's were available, and there was also a newly diagnosed woman interviewed who was very scared about her future (raise your hand, all of you who can relate!!). A neurologist explained the disease process, and there was a homeopathic dr who talked about alternative treatments.
Nancy Davis talked about how her first neuro told her to expect to eventually become disabled though she would probably still be able to operate a remote control for the TV. She talked about how important attitude and hope are in having a better life in the face of a chronic disease. She appears to be really healthy, no outward signs of the disease that I could see, she may be one of the lucky ones with the so-called benign course.
There were a couple of comments though that I think are inaccurate and/or misleading. The newly dx'ed pt said when she exercises her left hand went numb, and the homeopath told her to be careful not to overheat during exercise as overheating can cause flares. I don't believe this is true, doesn't overheating just cause a pseudo-flare? When I told my neuro the same thing, that my hands and torso and thighs go numb when I run, he said not to worry about it, overheating can temporarily exacerbate symptoms but does not affect the disease process/course, so this is no reason to stop exercising, in fact it's more important now than ever. And he's right, since I've gone back to exercising daily for the last little while, I feel better than I have in a long time, the numbness does worsen but I've learned to ignore it and anyway it calms down after a cool shower.
The homeopath also mentioned Vitamin C infusions; my understanding is that there is no evidence this helps MS disease course or relieves MS symptoms, in fact in theory I would think it would be the opposite to what the body needs as Vit C boosts the immune system, when in fact the CNS of MS pts may need to be tamped down. Does anyone here have any insight on this?
The neuro explained the disease process well, showed a MRI of the brain. Perhaps I missed this but I think he only talked about brain involvement, no mention of the spinal cord at all.
Of course this is an hour program with only a segment on MS. It's nice to see this topic covered on TV to raise awareness, the down side is that it's difficult to throroughly cover such a complex disease in such a short period of time. Since the topic was How to Prevent a Misdiagnosis, it would have been helpful if they talked more about MS mimics, what the various tests indicate in greater detail, etc.
BTW, Nancy Davis' foundation is the one that puts on the annual fundraiser in LA that I am attending next month. Kind of neat, maybe I'll even get to meet her.
Anyway hopefully in some time zones it's not to late to catch this episode.