Sunday, July 27, 2014
Be not so much concerned with the quantity of life as with the quality of life.
via @Edie Summers
My Interview with Authors of “Despite MS, to Spite MS” Dan and Jennifer Digmann http://portlandwellnesscoach.com/interview-with-authors-of-despite-ms-to-spite-ms-dan-and-jennifer-digmann/ …
Not surprisingly... Health Care Worry Is Associated With Worse Outcomes in Multiple Sclerosis http://psycnet.apa.org/psycinfo/2014-28818-001/ …
Check out Dr. Judith Steinberg's neurology news blog for MS-patients (site lets you translate) …http://esclerosismultipledrasteinberg.blogspot.no/2014/05/no-estres.html?spref=tw …
Seeing MS is a global photographic project that visualises invisible symptoms of #multiplesclerosis. Visit website; http://seeingms.com/
Most symptoms of MS go unnoticed by everyone except the one living with them. Uncover the unseen: http://seeingms.com/
Seeing MS - Exposing the invisible disease http://www.youtube.com/watch?v=Mu1Y5Qnoy84 …
Major stressful life events increase number of lesions on MRI. #multiplesclerosis http://www.overcomingmultiplesclerosis.org/News-And-Events/Whats-New-Out-There/Detail/Major+stressful+life+events+increase+number+of+lesions+on+MRI/ …
Went to Overcoming-MS-retreat, is now off med, beating MS with a veggie diet, vitamins and meditation http://dailym.ai/1k3rtKB
The vitamin D connection; more evidence: http://www.sciencedaily.com/releases/2014/01/140120173454.htm …
Keep eating D3!
A different take on living with MS. Check out this blog: http://followyournose22.wordpress.com/2014/02/14/meet-my-left-arm/ …
A constant finding in MS literature is that 'the sooner to cane, the sooner to wheelchair’. Better keep dancing! http://www.overcomingmultiplesclerosis.org/About-MS/Types-of-MS/Course-and-Prognosis/ …
Getting closer to a cure, guys... New potential #MS treatment may repair brain tissue and reduce nerve damage. =HOPE! http://www.medicaldaily.com/potential-multiple-sclerosis-treatment-repairs-brain-tissue-reduces-nerve-damage-268918 …
Francis Medley's final blog entry before ending her life with MS: http://victoriousendeavours.wordpress.com/2013/09/23/a-sophisticated-sign-off/ …
Leading academic left a blog entry before ending her life after suffering from multiple sclerosis: http://www.walesonline.co.uk/news/wales-news/francis-medley-left-blog-entry-6503648 …
RIP Francis M.
Listen to @MissLauraTee 's interview on living with MS and coming out on top: http://www.voiceamerica.com/episode/75252/knowledge-is-power …
Listen to my radio interview about my journey with MS &how not only am I overcoming it but have turned my life around http://www.voiceamerica.com/episode/75252/knowledge-is-power …
Fox news: "Bacterial toxin may trigger multiple sclerosis, research finds" http://us1.campaign-archive1.com/?u=df9e067d7226fb4924fc3caf6&id=bdd3ccdc6f …
Wednesday, July 23, 2014
Tuesday, July 22, 2014
Friday, July 18, 2014
People with multiple sclerosis experience a form of overwhelming lassitude or tiredness that can occur at any time of the day, for any duration, and that does not necessarily recur in a recognizable pattern for any given patient, referred to as "neurological fatigue".
Prolonged fatigue is a self-reported, persistent (constant) fatigue lasting at least one month. Chronic fatigue is a self-reported fatigue lasting at least six consecutive months. Chronic fatigue may be either persistent or relapsing. Chronic fatigue is a symptom of many diseases and conditions. Some major categories of diseases that feature fatigue include:
Autoimmune diseases such as celiac disease, lupus, multiple sclerosis, myasthenia gravis, and spondyloarthropathy
Modafinil is a vigilance promoting drug (or eugeroic) that is approved by the United States' Food and Drug Administration (FDA) for treatment of the wakefulness disorders of narcolepsy, shift work sleep disorder and excessive daytime sleepiness associated with obstructive sleep apnea. In English-speaking countries it is sold under the brand names: Alertec (CA), Modavigil (AU, NZ) and Provigil (IE, ZA, UK, US).
Modafinil has also found off-label use with the neurological fatigue reported by some with multiple sclerosis. In 2000, Cephalon conducted a study to evaluate modafinil as a potential treatment for MS-related fatigue. A group of 72 people with MS of varying degrees of severity tested two different doses of modafinil and an inactive placebo over nine weeks. Fatigue levels were self-evaluated on standardized scales. Participants taking a lower dose of modafinil reported feeling less fatigued and there was a statistically significant difference in fatigue scores for the lower dose versus the placebo. The higher dose of modafinil was not reported to be significantly more effective.
Hyland, MJ (May 3, 2013). "The drugs do work: my life on brain enhancers | Life and style"
. London: The Guardian. Retrieved December 31, 2013.
Jump up^ Rammohan KW, Rosenberg JH, Lynn DJ, Blumenfeld AM, Pollak CP, Nagaraja HN (February 2002). "Efficacy and safety of modafinil (Provigil) for the treatment of fatigue in multiple sclerosis: a two centre phase 2 study"
. J. Neurol. Neurosurg. Psychiatr. 72 (2): 179–83. doi:10.1136/jnnp.72.2.179
. PMID 11796766
Jump up^ Frost J, Okun S, Vaughan T, Heywood J, Wicks P (2011). "Patient-reported outcomes as a source of evidence in off-label prescribing: analysis of data from PatientsLikeMe"
. Journal of Medical Internet Research 13 (1): e6.doi:10.2196/jmir.1643
. PMC 3221356
. PMID 21252034
This note is included because Neurontin is a drug routinely prescribed to m.s. patients for nerve pain... furthermore, the issues of it being useless for the majority and that it may even be toxic to some people, seems to be ignored.
Pfizer to pay $142M for drug fraud
Sales of drug total $300M annually in Canada
Pharmaceutical giant Pfizer has been ordered to pay $142 million US in damages for fraudulently marketing gabapentin, an anti-seizure drug marketed under the name Neurontin.
A federal jury in Boston ruled Thursday that Pfizer fraudulently marketed the drug and promoted it for unapproved uses. The jury sided with California-based Kaiser Foundation Health Plan Inc. and Kaiser Foundation Hospitals, the first to try a gabapentin case against Pfizer.
Data revealed in a string of U.S. lawsuits indicates the drug was promoted by the drug company as a treatment for pain, migraines and bipolar disorder — even though it wasn't effective in treating these conditions and was actually toxic in certain cases, according to the Therapautics Initiative, an independent drug research group at the University of British Columbia.
The trials forced the company to release all of its studies on the drug, including the ones it kept hidden.
A new analysis of those unpublished trials by the Therapeutics Initiative suggests that gabapentin works for one out of every six or eight people who use it, at best. The review also concluded that one in eight people had an adverse reaction to the drug.
"The much larger majority of people will not get any benefit and many of them will have chronic neurotoxicity or poisoning of the brain," said Dr. Tom Perry of the Therapeutics Initiative.
Dr. Harry Pollett, a pain specialist in North Sydney, N.S., calls gabapentin a so-so drug with potentially serious side-effects for patients. These include drowsiness, balance problems, fogginess and edema, or swelling.
"Weight gain is a very common problem and I see that a lot," Pollett said.
The drugs represent a waste of money for Canada's health-care system, said Perry, who questioned why some doctors continue to encourage people to take the drug even though the patients are not benefiting.
"We have been using probably somewhere in the order of around $300 million a year in Canada recently and this drug has been overused since the late 1990s," Perry said. "So, do the math. It's probably well in excess of a billion dollars."
Pfizer defends its actions and its drug.
The company has already been hit with $430 million in penalties and fines for fraudulently promoting gabapentin in the U.S.
With files from the Associated Press
With files from the Associated Press