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Friday, April 5, 2013

Living Well with MS: Battling Fatigue



Posted by Lisa Emrich—April , 2013

Somebody zapped my energy and I just can’t seem to get going.  Does that happen to you?  There’s no good reason for it like having little kids to keep up with or being sick.  I’m just tired, so very tired lately.
One of my most disabling symptoms in the first years after the MS diagnosis was fatigue.  I could get up in the morning, feel normal, and crash shortly after noon.  That presented a challenge as my workday, teaching music lessons, would begin close to 3:00 pm.
FatigueMy husband (my boyfriend at the time) was sweet enough to give me an alarm clock to keep specifically near the couch as that was where I would crash.  I used that alarm clock regularly for months upon months every day.  When I talked to my neurologist and MS nurse about the fatigue, I was prescribed a medication and was told that coffee helped a number of people with MS fatigue.  I gave both a try with some success, but not always total success.
After I switched disease-modifying treatments in 2009, I realized that I hadn’t been fatigued.  I was no longer feeling the powerful urge to be a lump and do absolutely nothing.  As the drug I switched to was prescribed for my RA, I wondered if the fatigue was really RA-related rather MS-related.  Either way, fatigue is fatigue and it’s no fun.
The treatment I use for RA, Rituxan, has been studied for use in MS.  The trials in relapsing-remitting MS had positive results but the drug company chose to proceed in ongoing trials with a very closely related medication instead.  Since starting Rituxan, my RA has improved to the point that now I know what remission is and my MS has become quite stable.
Rituxan is a monoclonal antibody therapy which targets CD20+ B-cells and basically causes them to self-destruct.  It is given by intravenous (IV) infusion with treatment rounds separated by several months.  For me, as the effects of the therapy begin to wear off, I notice subtle symptoms returning.
The last couple of weeks, my toe joints have been a bit stiff.  During the past few days, the smaller joints in my fingers have complained with a whimper but not a full out cry.  Perhaps that’s why I’m so tired…the fatigue is returning because it’s getting closer to time for another round of treatment.
Yesterday, I slept several hours during the middle of the day, not all at once as I kept trying to wake up fully and do something productive.  It just didn’t work.  Today has been much the same.
Fatigue makes me feel like a heavy lump which can’t think straight and doesn’t want to do much of anything.  Do you know what I mean?
Perhaps I should rally myself to GET UP and go take a shower.  That might help; as I skipped it yesterday, I’ll certainly smell better.  It should also make me feel better.  Then I’ll go have some coffee.  It’s a little too late in the day to take Nuvigil as that would keep me up tonight when I want to go to sleep and insomnia is definitely not something I want to trigger.  Been there, done that before.
So, that’s it.  Decision made.  I will get cleaned up, drink some coffee, and find something to eat for lunch.  Sounds like a plan.
What do you do when you get fatigued?  Do you ever talk to yourself to get motivated to do something, or is that just me?  Please share your story.
Leave a comment to this blog posting to share your story. 


Article Source found here
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Intense workouts help woman with MS find Fit City Success


Updated: Apr 04, 2013 


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Thursday, April 4, 2013

Fighting Early MS Symptoms with Natural Remedies


Fighting Early MS Symptoms with Natural Remedies - 
written by:  Katie Brind’Amour, is a Certified Health Education Specialist
March 2013


According to the National Multiple Sclerosis Society, some of the earliest signs and symptoms of Multiple Sclerosis are fairly common: fatigue, coordination or dizziness problems, memory lapses, depression or anxiety, vision problems, numbness or tingling, and pain. As there is no cure for MS, many see the appeal of herbal remedies or natural supplements that may treat some of the condition’s symptoms. According to Healthline, a variety of potentially effective herbs and supplements may exist, but many natural remedies still need to be studied more closely for their impact on MS.

Herbs and supplements have strong medicinal properties. They may interact with other herbs, supplements, or medications, and should not be taken without consultation with a physician or pharmacist.

Fighting Fatigue

MS-related fatigue can be a burden. The weakness and lack of energy associated with MS may be alleviated, however, by supplements such as ginseng or vitamin B1. A recent randomized trial studied ginseng supplements and found a significant positive effect of the herb on fatigue and quality of life in MS patients. In addition, dandelion root or leaf has also been used for anti-fatigue properties.

Keeping Your Balance

Dizziness, balance, and coordination problems are also common symptoms in the early stages of MS. Although many herbs have been used for these symptoms historically, few have strong research supporting them. Gingko biloba is promising, however, for a reduction in dizziness and balance problems. In addition, physical therapy and exercise therapy offer the newly diagnosed (and more advanced individuals!) the perks of better muscle control and coordination.

Just Remember

The race is on to find effective drugs—natural or otherwise—to slow or reverse neurodegeneration. Although more research is needed, chyawanprash, CoQ10, and sage all show promise in early studies for their potential to boost memory ability and increase mental acuity.

Stay Positive
Beyond the MS community, millions of people around the world would love a natural treatment for anxiety and depression. The ever-popular St. John’s Wort offers assistance to many. Valerian, however, is a newer and promising entry to the mental health herb market; it may also improve insomnia (another frequent MS problem).

Seeing the Forest Through the Trees

Vision problems, such as macular degeneration, often occur over time in individuals with MS. Bilberry leaf may protect vision, and gingko biloba is under study for similar protective effects. Common supplements, such as vitamin A and zinc, are also essential for healthy vision—some trials suggest there is a general protective effect from a regular multivitamin.

Going Numb
Although numbness and tingling in the extremities is a common symptom of MS, it is difficult to treat. It is usually caused by nerve degeneration. Initial research has found a link between magnesium deficiencies and this symptom. Some studies suggest that taking magnesium supplements may help people avoid the numbness and tingling associated with MS.

Pain Aplenty
Pain is clearly not a symptom specific to MS. A wide variety of options exist for over-the-counter, prescription, herbal, physical therapy, and homeopathic pain relief remedies exist. Two herbal options that show some efficacy for pain management include catnip and ginger. Both of these herbs also have other properties that may prove useful to individuals with MS. Ginger, for instance, is also being widely studied for its anti-inflammatory ability.

Whatever you choose to manage your early MS symptoms, always be sure to discuss your options and potential interaction effects with a health professional. Each person’s health needs and symptoms differ, and some herbal solutions may be better understood after additional research.

Katie Brind’Amour, MS, is a Certified Health Education Specialist and freelance health science writer for sites such as Healthline.com and WomensHealthcareTopics.com. She enjoys learning about practical ways to live well while chipping away at her PhD in Health Services Management and Policy.




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An MS Drug Takes a Feisty Approach Aimed at Younger Patients





“MS strikes in the prime of life, and many patients use the Web and social media to connect,” said Dagmar Rosa-Bjorkeson, head of Novartis’s multiple sclerosis unit. “Many are now being diagnosed in their 20s and 30s, and early treatment makes the most impact, so we are trying to target those people who are active and digitally savvy.”
The campaign’s upbeat tone comes, Ms. Rosa-Bjorkeson said, from sentiments patients expressed on blogs and other forms of social media where “people were saying that ‘this disease is not going to stop me.’ ”
“Those were spirited words, with an edginess and power to them that wound up giving the campaign a bolder tone,” she said.


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MS MEDICAL BREAKTHROUGH -- 70% of patients reported symptom-free after stem cell transplants, chemotherapy


Ottawa doctors optimistic about new MS treatment



Ottawa doctors have developed a new treatment for multiple sclerosis that they say has eliminated the disease in 70 per cent of their patients.

Multiple sclerosis, or MS, is a disease where the body's immune system attacks itself, causing damage to the spinal cord and brain.
A team of doctors from the Ottawa Hospital are to publish findings in a yet-to-be-determined medical journal on a new treatment that uses stem cell transplants and high doses of chemotherapy.
The doctors have tested 24 people over the past 13 years, starting as an experimental study for patients with severe symptoms who did not improve using drug therapy.
Dr. Harold Atkins, a bone-marrow transplant expert, has helped lead the study. He said a large majority of the patients have gained long-term freedom from evidence of further MS.
"These transplants are pushing the limits of technology," Atkins said.
"We have to use very high doses of chemotherapy to get rid of the old immune system that's attacking the patient's brain … that has a lot of side effects."
CONTINUE READING to read of RISKS and more
WATCH AND LISTEN to Video of this procedure, found HERE


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Biogen Idec takes full ownership of Tysabri

3 April 2013 10:51 in Pharmaceutical Company Product News 

Biogen Idec has announced the completion of its move to acquire full strategic, commercial and decision-making rights to the multiple sclerosis (MS) drug Tysabri.

The company has bought out its partner Elan's share in the therapy in order to further strengthen its leadership in the MS treatment field and take a more active role in maintaining the future growth trajectory of the product.

Tysabri is approved in more than 65 countries, including a European indication for highly active relapsing-remitting MS in adult patients who have failed to respond to beta interferon or have rapidly evolving severe RRMS.

Biogen Idec is also currently carrying out a clinical study assessing the potential benefits the compound can offer in the treatment of secondary progressive MS.

In exchange for the full rights to the drug, Biogen Idec has paid Elan an upfront fee of $3.25 billion (2.15 billion pounds) plus tiered contingent payments based on future Tysabri worldwide sales.

Dr George Scangos, chief executive officer of Biogen Idec, said: "We are grateful to Elan for more than a decade of collaboration on Tysabri and for their work to provide a seamless transition as we finalised the transaction."ADNFCR-8000103-ID-801565663-ADNFCR

Source: http://www.zenopa.com/news/801565663/biogen-idec-takes-full-ownership-of-tysabri

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Wednesday, April 3, 2013

Salt May Increase Risk for Multiple Sclerosis


Studies published in Nature describe data that seem to point to a link between sodium and the risk for developing autoimmune diseases, such as multiple sclerosis.
The researchers found that people who ate fast food more than once a week had a higher number of TH17 cells than people who did not eat fast food. These TH17 cells usually help the body repair itself or fight disease, but it seems like salt may cause them to multiply too fast, at which point they attack the body's own tissues and cause autoimmune disease.
Exposing the immune cells of mice to sodium caused the cells to produce more TH17. When mice that were genetically engineered to develop MS were fed a high-salt diet, their disease progressed rapidly.
While it is too early to make definitive recommendations about people with MS cutting back on sodium, I would think that this information would motivate people with MS to reduce salt in their diet.
Article source - ABOUT.com


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Exercise Adaptations for Multiple Sclerosis


Published on Mar 31, 2013

(Video might appear black and take a few moments to open,
depending on your internet connection)




Video produced by The MS Foundation

Jeff Segal, BS, NSCA-CPT, CSCS, CPTS, CPR/AED shows us some simple adaptations for exercising with multiple sclerosis. 


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Medicare beneficiaries with chronic health problems can now continue to be covered for physical therapy

Information obtained from NMSS.org


Settlement helps Medicare recipients receive better care for chronic illnesses
Medicare beneficiaries with chronic health problems can now continue to be covered for physical therapy because of a recent court settlement.






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