The following article appeared in the Times (UK newspaper) last weekend.
http://www.mstrust.org.uk/news/recentst ... jsp?id=704
PS I haven't gone to sleep on identifying MS research articles. There's just nothing to report at the moment. I suspect that the recent ACTRIMS / ECTRIMS conference sucked in most research undertaken in the last year. The researchers will also be holding back some papers to justify a trip to the Australian MS Society conference being held next March.
Article on ms
The article touched on one of the big problems with getting an MS diagnosis. The fallout of the MS diagnosis itself is often separate from the disease. It has especially grim effects in the US with only private insurance available. Getting medical insurance becomes impossible (at least in the US). Getting life insurance is extremely prohibitive if not impossible. This impacts the ability to carry a mortgage. Employment options become much more limited. This all happens even if a person recovers from the event that prompted the diagnosis and has few to no symptoms for months or years, perhaps not even for many years if ever, because who really knows what will happen? I asked my neuro for a prognosis, and he just laughed and shook his head. That was a truthful response. Yet I feel the diagnosis has turned me into a total pariah. It is said repeatedly that MS is not necessarily a terminal or totally disabling disease, but the system hedges its bets and considers it one, to be on the safe side. So I have to consider MS to be a terminal disease when I make the remaining choices in my life, regardless of how I progress.
MRIs and CRABs really changed things. The MRIs pick up the lesions, and having the CRABs, with the indication that early treatment is best, give neuros reason to make the diagnosis, whereas in the past the neuros were less likely to pronounce it based on symptoms only, they didn't have the imaging to see lesions, and there was no treatment to offer anyway. This has a double-edged effect. Getting a diagnosis brings some clarity, but the availability of CRABs doesn't give prospective employers any more confidence in hiring. It certainly doesn't encourage medical and life insurance companies to underwrite. I'm not advocating that the diagnosis not be made. However, for a potentially growing number of people on the mild end or early end of this long broad spectrum that is called MS, the diagnosis can be far more damaging and life-limiting than the disease itself. This is something I don't see discussed much in the journals. Thanks for the article, Bromley.
Lisa
MRIs and CRABs really changed things. The MRIs pick up the lesions, and having the CRABs, with the indication that early treatment is best, give neuros reason to make the diagnosis, whereas in the past the neuros were less likely to pronounce it based on symptoms only, they didn't have the imaging to see lesions, and there was no treatment to offer anyway. This has a double-edged effect. Getting a diagnosis brings some clarity, but the availability of CRABs doesn't give prospective employers any more confidence in hiring. It certainly doesn't encourage medical and life insurance companies to underwrite. I'm not advocating that the diagnosis not be made. However, for a potentially growing number of people on the mild end or early end of this long broad spectrum that is called MS, the diagnosis can be far more damaging and life-limiting than the disease itself. This is something I don't see discussed much in the journals. Thanks for the article, Bromley.
Lisa
-
whyRwehere
- Family Elder
- Posts: 917
- Joined: Mon Oct 03, 2005 2:00 pm
- Contact:
I posted the article because it set out how many people feel.
Lisa,
Like you I asked what the prognosis was and the neuro shrugged his shoulders. For someone who liked a degree of certainty - the uncertainty caused by this disease is the killer. Neuro-protection should provide some more certainty if they halt or dramatically slow down the progress of the disease. Stem cells may also allow some repair. But at the moment we are stuck in the middle with treatments that are only moderately effective and a future where better treatments must be round the corner. But no one knows how long the corner is!
Bromley
Lisa,
Unfortunately this is me. I saw my father's friend die at 52 from this disease (in a bad way). That to me is MS and always will be.the diagnosis can be far more damaging and life-limiting than the disease itself.
Like you I asked what the prognosis was and the neuro shrugged his shoulders. For someone who liked a degree of certainty - the uncertainty caused by this disease is the killer. Neuro-protection should provide some more certainty if they halt or dramatically slow down the progress of the disease. Stem cells may also allow some repair. But at the moment we are stuck in the middle with treatments that are only moderately effective and a future where better treatments must be round the corner. But no one knows how long the corner is!
Bromley