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Health hotline: MS patients wonder about treatments, tools and temperature control

Published: Saturday, Aug. 13 2011 11:43 p.m. MDT

SALT LAKE CITY — Heat can wreak havoc on someone who has multiple sclerosis, exacerbating symptoms significantly.

It's not like a hot flash, nor is it a case where the internal thermostat is off and an individual feels miserably overheated. Even half a degree change in temperature can increase inflammation and make the disease's symptoms worse.

What to do about it was one of the questions asked by several callers to the Deseret News/Intermountain Healthcare Hotline Saturday.

Dr. Viktoria Kaplan, a neurologist at LDS Hospital and the Rocky Mountain MS Clinic, and Clare Wright, direct services manager for the National Multiple Sclerosis Society Utah, fielded dozens of questions during a very busy hotline. They also answered questions posed via the Deseret News Facebook page.

There are actually vests made specifically to deal with the problem, said Wright. An individual can pop a frozen cushion into the vest, which targets the chest area at about heart level to reduce temperature. That's good for a couple of hours. Someone who's at home can just take a cool shower or bath. But anyone who's going to be out all day needs to take an ice chest along to keep swapping out the cushions, she noted. The impact on symptoms can be severe.

Other callers wanted to know about how the diagnosis is made and the availability of assistance for people who don't have health insurance to cover the cost of tests and treatments.

There are programs available, including some run by the medication makers to provide needed medicines to patients who cannot afford them. The Multiple Sclerosis Society of America has a limited program to help with the cost of magnetic resonance imaging of the brain, but not the spine. There are application processes for all those programs. And Wright's agency can provide a list of Wasatch Front neurologists skilled in treating MS.

Many neurologists have specialties. Kaplan recommends finding a neurologist on your insurance plan and asking what he or she specializes in to find someone used to treating MS.

One caller wanted to know about a surgical procedure that's touted by some to treat "chronic cerebro-spinal venous insufficiency" in MS patients.

Neither Kaplan nor Wright recommend the procedure, called CCSVI (the acronym for the name). Serious complications have been reported, and neither national interventional radiology nor cardiology groups support it, Kaplan said. She noted that anyone who is interested in it should enter a study.

Kaplan told one patient who said her symptoms had gotten much worse that she should be checked for infection.

Another said she'd been diagnosed with MS but her symptoms abated and have not bothered her again. Is she cured, she wondered.

"We don't believe there's a cure for MS, but 1 in 10 will have a mild version," Kaplan said. "I wouldn't use the word 'cure,' but it is possible to not have any progression."

The Deseret News and Intermountain Healthcare team up the second Saturday of every month to tackle a different health topic.

EMAIL: lois@desnews.com

What is MS?

Multiple sclerosis is a disease in which the immune system damages myelin, the sheath that protects the nerves. That damages communication between the brain and the rest of the body, resulting in various symptoms that may come and go or may get progressively worse. Some people suffer little ill effect, while others are severely debilitated.

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