new campaign in the UK

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new campaign in the UK

Postby whyRwehere » Mon Oct 08, 2007 5:44 am

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Postby gibbledygook » Mon Oct 08, 2007 6:23 am

50 new diagnoses a week! The figures of 80,000 as total sufferers looks less and less plausible by the day. This figure, I was told by Dr Giovannoni, was based on a census done in the 1970s. I'm no statistician but if one is diagnosed between the age of 20 to 40 as allegedly the majority are and if one has 30 years more life, then during one's lifetime 78,000 additional diagnoses are made. This figure doesn't even include any of those diagnosed before one's own diagnosis. I simply don't believe that only 80k people in the UK suffer from this disease.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby LisaBee » Mon Oct 08, 2007 5:47 pm

gibbledygook,

I wonder about prevalence too. About 300K in the U.S. is often quoted.

However, with the advent of using the MRI and the push to treat with CRABs, I wouldn't be surprised if the number has gone way up, compared to the 1970s, given that more people would be diagnosed. Seek and ye shall find....

I was diagnosed solely on the basis of MRI in 2004 - I did not have any other clinical test. Twenty years ago, even 10 years ago, I doubt I would have even been diagnosed with MS, even though I suspect I've had it (or whatever "it" is) for at least that long. I suspect formerly, doctors would wait and see on more borderline symptoms, reserve the diagnosis for more clear-cut cases. Some people might have a clinically isolated event and never have another neuro symptom, others might draggle along with low-grade nonspecific symptoms, like fatigue, which I had on occasion. An MS diagnosis in the US is like the kiss of death, it forever blocks you from access to health insurance coverage for ANY ailment or injury, let alone your MS, should you lose your employer insurance and don't meet eligibility for government assistance. You become a pariah as far as U.S. medical insurers are concerned. Back when there were no treatments, no good diagnostic imaging, and partly because of medical insurance here (there was also the psychological impact, tragic for a wrong diagnosis), there was an actual disincentive for a doctor to hand out the MS diagnosis in the case of mild or isolated symptoms.

So before CRABs (which was also before MRIs), doctors were probably less likely to make an MS diagnosis, particularly in the case of milder disease. Now, there is more of a "push" for diagnosis, since the general wisdom is to do an MRI and if indicated, to start this now available drug treatment earlier rather than later. I suspect, if there were a cheap, screening level blood test for MS, (like blood and urine sugar in diabetes) there would be even more MS cases found, as MRIs and spinal taps are pricey and the latter somewhat risky and unpleasant to be a screening test. Just think, if everyone complaining of something like fatigue or tingling fingers got a quick "MS blood test", how many more cases would be found?

I understand there are case reports of "subclinical" MS, that is, people only diagnosed on autopsy or diagnosed incidentally while alive, like when getting an MRI following a head injury after getting bucked off a horse or something (see Siva 2006 review article for examples). Whether those people are truly asymptomatic or their symptoms are so low-grade is unknown. Before MRIs, live subclinical cases were undiscovered. Now, they too may get added to the MS pool if the doctor decides early treatment is a good idea. That means - more cases.

This makes we wonder too about articles tracking the "natural history" of MS. Older studies tracking natural history of MS tended to indicate a worse prognosis than more recent ones. Many of the people in the early 20th century did not live more than a few years post-diagnosis. I just wonder if that is because back then, only the most severe cases were diagnosed, or were only diagnosed when they reached a certain stage. Since many people now are on CRABs, some authors report the drugs are improving overall long-term prognosis. I am not so sure, I have to wonder if in recent years, the pool of MS diagnosed persons has been "diluted" by those with milder disease that would not been diagnosed in earlier years and that has impacted observed disease course in the MS population. I doubt that confounder is controlled for in the studies.

Just some rambling thoughts on MS epidemiology. There is so much not known about this disease.
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Postby gibbledygook » Tue Oct 09, 2007 1:16 am

I think you are absolutely right on several points especially the diagnosis and prognosis of only the severest cases in the past. Still I can't wait for the headline of MS cases double in 2 decades or whatever the figures will be as that should put the fear of god into the chattering classes.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby LisaBee » Tue Oct 09, 2007 6:01 am

I agree! I think MS is more common - even with MRIs, I think it ("it" being demyelinating disease) is under- rather than overdiagnosed. Some of the Scandinavian countries might be interesting to check out, like Sweden. They tend to have the best tracking on the national level.

I say "demyelinating diseease" here because it is my personal belief that MS is a cluster of different diseases, as yet poorly defined, that have been lumped together. For a public awareness campaign, though, I'm all for an inclusive category. Strength in numbers!

It has been amazing what awareness campaigns (but first screening tests) have done for certain diseases. Breast cancer is probably the prime example. With screening mammograms, there have been large numbers of breast cancers diagnosed that in the past would have never been found. A lot of the cancers, particularly in older women, would have not been diagnosed in the past, because in the past the women would have died of some other cause like a heart attack. There are subtypes of breast cancer that don't spread readily, and if you didn't look for them, they would probably never be found. Other subtypes are highly aggressive. Some forms are much more treatable than others. But they ALL get counted as "breast cancer", a single category, once found. It is up to about 1 in 8 women now over their lifetime. Prostate cancer is the male equivalent.

Diabetes is another example, at least in the US. Older studies show lower prevalence than currrent. Some of that is probably real, given the alarming increase in obesity. However, some of it was underdiagnosed in the past because people weren't screened for it as rigorously as now. A comic on TV here quipped "I went to see the doctor for a twisted ankle, and came out with diabetes."
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