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Friday, August 2, 2013

FDA issues warning about acetaminophen (NOT MS related)

Skin conditions warning to be required on labels

Author: By Val Willingham CNN
Published On: Aug 01 2013


The Food and Drug Administration warned consumers on Thursday that popular pain reliever acetaminophen may cause serious skin reactions in some people.
The FDA will now require a warning about the skin conditions to be added to the labels of prescription drug containing acetaminophen and will ask manufacturers of acetaminophen products to add warnings to their over-the-counter medications.
Acetaminophen is found in numerous prescription and over-the-counter products designed to treat pain and reduce fever.
According to the FDA, the skin reactions, known as Stevens-Johnson Syndrome, toxic epidermal necroylis and acute generalized exanthematous pustulosis are rare but can be deadly. These conditions can cause blisters, serious rashes, reddening of the skin and the detachment of the upper surface of the skin known as the epidermis.
The reactions can appear at any time people take the product, even if they only take it once. Other drugs designed to treat fever and pain, such as ibuprofen and naproxen, also carry the risk of these skin reactions, but they already carry a warning on their labels.
The FDA stresses that anyone who develops these types of conditions after using acetaminophen should stop taking the product immediately and visit a doctor or emergency room. If people have already experienced these skin problems while occasionally taking acetaminophen, they should not take the drug again and should inform their doctor about the reaction, the FDA said.

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Find A Cure Panel is looking for people to participate in a 30 - 45 minute anonymous and confidential telephone call regarding their recent participation in a MS clinical trial.



Qualitative research for those who have participated in a MS clinical trial in the last 6 months


Find A Cure Panel is looking for people to participate in a 30 - 45 minute anonymous and confidential telephone call regarding their recent participation in a MS clinical trial.

To qualify, you must have participated in a MS clinical trial in the last 6 months.

Note this is NOT a clinical trial but an opportunity to share your opinion about participating in one. If you qualify, likely you have much to say!

For those who participate, FACP will donate $100 to MS Views and News.

If you are interested in participating, please email info@findacurepanel.com and reference QUAL research re: MS Views and News.


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Thursday, August 1, 2013

Multiple Sclerosis and Vision Problems

Vision problems are relatively common in people with multiple sclerosis (MS); however, rarely do these problems result in total blindness. 

What Type of Vision Problems Are Linked to Multiple Sclerosis?

Optic Neuritis
Optic neuritis is the inflammation of the optic nerve, the nerve that transmits light and visual images to the brain, and is responsible for vision.
According to the National Multiple Sclerosis Society, 55% of people with MS will have an episode of optic neuritis. Frequently, it's the first symptom of the disease. Although having optic neuritis is very suggestive of MS, it does not mean that a person has or will get MS.
Multiple Sclerosis Vision Problems
The symptoms of optic neuritis are the acute onset of any of the following:
  • Blurred vision
  • Graying of vision
  • Blindness in one eye (usually)
It's rare that both eyes are affected simultaneously. And pain is rare. Loss of vision tends to worsen over the course of a few days before getting better. This usually takes about four to 12 weeks. Treatment may include intravenous and/or oral steroids to control the inflammation.
Double vision occurs when the pair of muscles that control a particular eye movement are not coordinated due to weakness in one or more of the muscles. Although annoying, double vision usually resolves on its own without medical treatment.
Uncontrolled Eye Movements
Uncontrolled horizontal or vertical eye movements, called nystagmus, is another common symptom of MS. Nystagmus may be mild or it may be severe enough to impair vision. Some drugs and special prisms have been reported to be successful in treating the visual deficits caused by nystagmus.
Temporary Blindness
Temporary blindness in one eye may occur at the time of an acute exacerbation of MS. An exacerbation -- also known as a flare -- is a sudden worsening of a MS symptom or symptoms, or the appearance of new symptoms, which lasts at least 24 hours and is separated from a previous exacerbation by at least one month.
Temporary blindness is most often due to optic neuritis.

Article Source: WebMD




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Wednesday, July 31, 2013

My Travels With Multiple Sclerosis - a Patient's story

By: Cathy Chester                                    July 20, 2013

“The World is a book, and those who do not travel read only a page.” ~Saint Augustine

I’ve lived almost half of my life with Multiple Sclerosis (MS), an autoimmune disease that affects over two million people worldwide. MS is a chronic, unpredictable disease that is thought to attack a person’s own immune system, causing issues such as fatigue, low vision, weakness and numbness, problems with bladder and bowel, cognitive deficits and paralysis.
Each person has MS differently; no two cases are alike.
Most people who are diagnosed with MS are between the ages of 20 to 40; though there are have been cases of people being both younger and older.
It is not a fatal disease, yet patients with the more serious type of MS may experience complications that then become fatal.
My MS has manifested itself with issues of numbness and tingling (I can’t feel my right leg), weakness (when I’m tired my legs give out or I walk like I’m drunk), some bladder issues, and overwhelming fatigue. (Imagine how you feel when you’ve had the flu. Now multiply that by 1,000 times!)
Two enemies of people with MS are stress and extreme temperatures.

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Sex and Multiple Sclerosis

By , About.com GuideJuly 30, 2013






I recently read Mary Roach's book entitled, Bonk: The Curious Coupling of Sex and Science. The book covers the "science" of sex - how sex has been studied in the past and what the conclusions have been in terms of why certain things happen during sex (or not).
Mary is an amazing author and can turn any subject into fodder for delightful reading. One thing that I came away with, however, is that sex relies heavily on our nervous system to be successful and enjoyable. While I am pretty sure that this is not news to anyone, it helps to remember that those of us with multiple sclerosis are at a distinct disadvantage in many instances when it comes to sex, since important neural pathways do not function the same in us as in people without MS.
All is not lost, however. There is much that we can do to bring the necessary spark to our sexual encounters. Like many other activities, though, sex may have to be a little more deliberate and require a little more effort on our parts to be all that it can be.
Have a look at some of the following articles on sex and MS:

Article Source: about.com


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Patient taking Novartis MS pill developed rare disease

Tue Jul 30, 2013 
* Patient took Novartis' Gilenya MS pill
* Developed progressive viral disease
* First incidence in 71,000 patients
ZURICH, July 30 (Reuters) - A patient taking Novartis' multiple sclerosis pill Gilenya developed a rare and potentially fatal viral disease, the Swiss drugmaker said on Tuesday, an unexpected setback as it faces growing competition from new oral treatments.
Gilenya is one of Novartis' big new drug hopes, growing 66 percent in the second quarter to $468 million. But the drug faces competition from new medicines such as Biogen Idec's Tecfidera.
Novartis said it had been informed of a case of progressive multifocal leukoencephalopathy (PML) in a patient who had been taking Gilenya for MS for seven months.
It said it was working with the reporting physician to understand all possible contributing factors, including those beyond treatment, given several atypical features of the case.
"The course of the underlying neurological disease was rapid with some atypical findings for MS on the MRI scans of the brain and spinal cord, as well as some unusual clinical features," Novartis said in a statement.

Novartis said all previously reported cases of PML among the approximately 71,000 patients treated with Gilenya thus far had been attributed to prior treatment with Biogen Idec's Tysabri, which bears a known risk of PML.

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Sunday, July 28, 2013

TMS Therapy for Depression

For decades, researchers have sought safe and effective treatments for depression. However, there is no single depression treatment which has been proven to work for everyone. Depression is often treated with antidepressant medications; however, alternative treatments for depression are available. These depression therapies have been shown to work in people who do not receive benefit from medications or cannot tolerate the side effects caused by them. One alternative therapy for the treatment of depression is transcranial magnetic stimulation (TMS). NeuroStar TMS Therapy was recently FDA-cleared for patients suffering from depression who have not achieved satisfactory improvement from prior antidepressant medications.

Transcranial Magnetic Stimulation (TMS)

Transcranial magnetic stimulation therapy uses short pulses of magnetic fields to stimulate nerve cells in the area of the brain thought to control mood. It is sometimes referred to as rTMS which stands for repetitive transcranial magnetic stimulation. TMS patients receiving TMS Therapy remain awake and alert during the procedure.
NeuroStar TMS Therapy ® is an outpatient procedure. The typical treatment course consists of at least 5 treatments per week over a 4-6 week period for 20-30 treatments. Each depression treatment session lasts approximately 37 minutes. NeuroStar TMS Therapy is:
  • Non-invasive, meaning that it does not involve surgery. It does not require any anesthesia or sedation, as the patient remains awake and alert during the treatment.
  • Non-systemic, meaning that it is not taken by mouth and does not circulate in the bloodstream throughout the body.
  • FDA cleared for patients who have not benefited from prior antidepressant treatment.
* NeuroStar TMS Therapy® is indicated for the treatment of Major Depressive Disorder in adult patients who have failed to achieve satisfactory improvement from one prior antidepressant medication at or above the minimal effective dose and duration in the current episode.

LEARN MORE -- CLICK HERE
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Research: Studying the impact of social support on the quality of life of spousal caregivers of patients with Multiple Sclerosis

Hello everybody -- I was asked to supply the study showing below, for the Caregivers of those with MS. If you are reading this and you have MS, please ask a caregiver to complete the study. If on- the-other-hand, you are the caregiver, then we hope you will be pro-active and complete the information being asked. -- Thank you,
Regards,
Stuart Schlossman
Stu's Views & MS News
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My name is Camille Simonetti, and I am currently a doctoral student in the field of counseling psychology at the State University of New York at Buffalo. I am studying the impact of social support on the quality of life of spousal caregivers of patients with Multiple Sclerosis.

 My hope is that my research will result in an increase in programs dedicated to caregivers of people with Multiple Sclerosis as well as other support resources for caregivers. I have created a survey that takes 40 minutes to complete. 

The study has been approved for posting by health policy staff of the National MS Society and is listed here -

I have attached a paragraph along with the link below. Any help would be much appreciated.
If you are a caregiver who has a spouse with Multiple Sclerosis, you are invited to participate in this research study in understanding the factors that contribute to the quality of life of caregivers who have a family member with Multiple Sclerosis. 

This study has been approved by the IRB (International Regulatory Board)


Please click on the link below if you are interested in participating:
http://www.surveymonkey.com/s/K5TBHMN

Sincerely,
Camille Simonetti
Doctoral Student in Counseling Psychology
SUNY Buffalo



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Multiple sclerosis in children rare - but often worse

Pediatric MS was virtually unheard of before the definition of the disease was changed in 2001, to allow patients under 15 to receive the diagnosis. Now 8,000 have been diagnosed worldwide

Karen Weintraub, Special for USA TODAY





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July 27, 2013


BOSTON — Two years ago, at age 12, Peter Marggraf of Newfields, N.H., suddenly started talking oddly, his face went blank and he couldn't remember what year it was. He spent 10 days at Boston Children's Hospital and still, no one was sure what was going on.

Victoria Esselman was also 12 when she had her first episode. Her right arm had been tingling for several months — as if it had fallen asleep and couldn't wake up — and then her eyes started moving in different directions. "One went one way, the other went the other way," her mother, Odette Esselman, of Medford, Mass., said.

Victoria, also ended up at Boston Children's, where both she and Peter were eventually diagnosed with multiple sclerosis.

MS is well known as a devastating disease, usually striking women in their mid-30s or 40s. Patients are told that they are heading down an uncertain path that will lead to clumsiness and discomfort, and possibly a wheelchair and/or loss of brain function.

As devastating and mysterious as such a diagnosis is in adults, the disease is often worse in children, who generally have more troubling episodes, as well as more years to decline. Though quite rare — only about 8,000 children have the disease worldwide — pediatric MS is gaining medical attention.

Pediatric MS was virtually unheard of before the definition of the disease was changed in 2001 to allow patients under 15 to receive the diagnosis. The youngest child diagnosed so far was just 20 months.

The field has come far since then, said Lauren Krupp, a neurologist and director of the Lourie Center for Pediatric MS at Stony Brook University in Long Island, N.Y.

Drug companies are now poised to begin the first clinical trials in children with MS. Nine centers are now collaborating across the country to share data and treatment advice. And researchers, including Krupp, believe that studying these children will help them better understand the environmental triggers that lead to MS and perhaps all autoimmune diseases.



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A shoulder for caregivers to lean on

Sun, 28 Jul, 2013 

The Well Spouse Association, which will have its annual conference in Philadelphia in October, has provided a lifeline since 1988, when it was founded by author Maggie Strong. She was caring for her husband, stricken with multiple sclerosis, and had written the book, Mainstay: For the Well Spous...
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