A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.
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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.
My 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.
TYLER (KYTX) - Exercise is crucial for people living with multiple sclerosis. Studies have proven working out helps manage MS symptoms. An East Texas woman diagnosed with MS 10 years is finding Fit City Success at a morning boot camp.
Marketta Simmons no longer takes any medications for her multiple sclerosis. She believes her faithful boot camp workouts have helped wean her off the MS medicines.
It was a year ago Marketta decided she needed something more from her workout.
"I was looking for something that was challenging and something I could increase the intensity of the work and someone who really pushed me," says Marketta Simmons.
Marketta found that in Melanie Edwards workouts at East Texas Adventure Boot Camp. Since 2003, Marketta has battled multiple sclerosis and the toll it takes on her body. "I knew something was wrong. There was numbness all over," says Marketta. "There was numbness in the hands, the feet, the legs and even now I still deal with the numbness and the weakness of the muscles."
MS is a chronic disease. That's often disabling. It attacks the central nervous system.
"Being diagnosed with MS, we often have a lot of problems with our muscles. So we must exercise every day and we must have an exercise that fatigues our muscles to strengthen our muscles and that is what boot camp has done for me," says Marketta.
Melanie uses a PVC pipe as a workout bar. She actually fills it with water and uses it for functional training. It helps her students like Marketta work on their balance.
"Coming to boot camp regularly, I don't have as many symptoms as I used to," says Marketta.
Marketta admits she has a love hate relationship with the challenging, exhausting workouts.
"If I didn't exercise, I would have problems walking, problems lifting things, problems with my hands, basically home bound," says Marketta.
So, the boot camp results are worth it. "So this has saved my life."
MS can take a toll physically and mentally, but Marketta says with her intense exercise, she's regained her energy and it helps get her through each day.
Fighting Early MS
Symptoms with Natural Remedies -
written by: Katie Brind’Amour, is a Certified Health Education Specialist
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
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.
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.
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.
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.
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 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
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.
THE Swiss drug makerNovartisis taking a sassy new tack to win converts to its oralmultiple sclerosistreatment, Gilenya. Its “Hey MS, Take This!” campaign shows patients sticking out their tongues with Gilenya capsules on them to show their willingness to fight back against the neurological condition.
The campaign, which begins this week, is aimed at younger people with multiple sclerosis, a chronic autoimmune disease with symptoms like fatigue, difficulty in walking and blurred or double vision. The campaign will be in national print outlets, including a half-dozen national magazines like People, Shape and Self, and on the Web sites of women’s magazine. A television-style online video will also be available on social media outlets.
“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.
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."
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.
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.