Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
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Monday, March 28, 2011

Study in Pediatric MS Shows Racial Differences in Cognitive Impact

MS affects some cognitive functions more severely in black children than white children, according to newly published research from a team at the University of Alabama at Birmingham (UAB). The findings could help healthcare providers create individualized treatments for children suffering from the disease.

"We don't yet understand the biological reasons, but the bottom line is treatment options must be re-evaluated and be aggressive enough, especially with black patients, to prolong quality of life for as long as possible," says Kelly Ross, M.A, a psychology doctoral degree candidate in the UAB College of Arts and Sciences and lead author of the study.

Although MS in children is much less common than in adults, the disease may impact cognitive function more in younger people because their nervous systems still are developing.

Sunday, March 20, 2011

What Does “Disabled” Mean?

There is really only one criterion for disability: can you do substantial paid work? “Substantial” means earning $800 a month. And it doesn’t have to be work you know, or work that is available in your community. Ability to do any kind of full-time paid work at all can disqualify you. (One major exception: if you work for yourself, the Social Security Administration [SSA] looks at your net income – what you report to the IRS – not at your gross.)

There are five ways people with MS can prove disability. These include substantial limitation of vision, cognitive problems, fatigue, or major disability of two extremities. SSA can also combine these factors, evaluated on what they call a “grid” of over-all disability.

You’ll need evidence to get disability. Rosemarie Johnson says, “You have to be proactive. Keep a journal and write about your symptoms and how they limit your activity. See your doctors regularly. That way, if you do need to apply for disability, you’ll have solid documentation.”

A detailed letter from your doctor testifying to fatigue or cognitive problems is powerful evidence of disability. So your doctors should ask about fatigue and cognition at each appointment, or you should bring it up. It’s helpful to get a neuro-psychological evaluation every couple of years and again before applying for disability. Letters from family, friends or anyone who has observed your daily activities can also document your disability

Saturday, March 12, 2011

Use your existing benefits and entitlements

No single insurance policy, program, or discount card is likely to include every prescription drug you may need. To find the best prices and services, you should take some time to identify the program or programs that can best meet your needs. The Internet is the best way to access this information. You may want to ask a family member or friend to help you, especially if your Internet access is in a public library, community center, or Internet café.

If you have some coverage for prescription drugs, make sure you’re making the best use of it to minimize your out-of-pocket burden. Review your health plan manual.

Are you following the plan’s rules about choice of pharmacy, the plan’s formulary (list of drugs approved for coverage) or “tiered co-payment” arrangements?

Are you using a mail order pharmacy for medications you take regularly over time? Most plans offer savings for this. If you need drugs such as antibiotics or painkillers right away or on a short-term basis, you can get them at a community pharmacy even if you use mail order for your long-term needs.

Have you discussed generic alternatives with your doctor?

Tuesday, March 1, 2011

MS and sunlight

Higher levels of sun exposure and higher blood levels of vitamin D were both associated with decreased risk of having a first demyelinating event that can be the first indicator of multiple sclerosis, in a comprehensive study undertaken in Australia, called the Ausimmune Study. (A first demyelinating event, in this study called FDE, is also known as clinically isolated syndrome (CIS), a first neurologic episode caused by inflammation/demyelination in the brain or spinal cord.) Some of these individuals developed MS during the study and others did not, however findings were similar in either case. Robyn Lucas, PhD, Anthony McMichael, PhD (The Australian National University, Canberra) and colleagues across Australia report their findings in Neurology (2011;76:540-548). This study was supported by the National MS Society, the National Health and Medical Research Council of Australia, the ANZ William Buckland Foundation, and MS Research Australia.

The findings provide additional support for previous suggestions that sun exposure and vitamin D may help protect against developing MS. It remains to be seen whether safe and effective strategies can be developed that utilize this potential protection without the risks involved in overexposure to the sun or overdoses of vitamin D supplements, and whether these findings have relevance for individuals who already have MS.

Background: In all parts of the world, MS is more common at latitudes that are farther from the equator and less common in areas closer to the equator. This latitude effect has been under investigation for many years. Previous studies have found evidence suggesting that higher lifetime exopsure to sunlight (through which the skin makes vitamin D) and higher blood levels of vitamin D may reduce a person’s risk of developing MS. This is an active area of continued research.

The Ausimmune study was undertaken to investigate whether increased exposure to sunlight in those living closer to the equator and the vitamin D that is produced in part by sunlight may be protective against MS. Rather than studying people who had already been diagnosed with definite MS, which could alter a person’s lifestyle and recollection of past events, the team investigated sun exposure and vitamin D levels in people who had not yet been diagnosed with MS, but who had experienced a CIS. A CIS often, but not always, leads to a diagnosis of MS.

The Study: The investigators recruited participants who were aged 18–59 years and lived in four geographic regions of Australia between November 1, 2003, and December 31, 2006. The four regions were characterized by differing distance from the equator. A total of 216 people were enrolled who had experienced a CIS. A total of 395 controls were randomly selected from the Australian Electoral Roll and matched to the CIS cases in age, gender, and study region.

Sun exposure was measured in several ways, including by participant reports on how much time they spent in the sun during different periods of life starting from age 6, and also by more objective means, such as examination of the skin for sun damage (actinic skin damage) and measurements of skin pigment (melanin). The latitude and longitude of participants’ residence were also recorded as an indicator of ambient ultraviolet (UV) light. Vitamin D levels were measured by a blood sample taken at entry into the study.

The results show that higher recent or lifetime sun exposure and higher blood levels of vitamin D at study entry were independently linked with a reduced risk of CIS. The investigators reported that people with most evidence of skin damage from sun exposure were 60% less likely to develop a CIS than those with the least damage. People with the highest levels of vitamin D at entry also were less likely to have a CIS than those with the lowest levels. As reported in other parts of the world, this study confirmed a latitude effect in Australia. Taken together, differences in sun exposure, vitamin D levels, and skin type accounted for a 32.4% increase in CIS incidence from the low to high latitude regions of Australia.