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On this blog -View all to the left and all to the right. Scroll through entire page, to find information that could EMPOWER You. At the Bottom of this page, see informational videos.

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Monday, June 17, 2013

Living with Advancing Multiple Sclerosis: Series Overview (10-part Video series)

Living with Advancing Multiple Sclerosis: Series Overview

This 10-part video series delves into the stories and perspectives of real-life multiple sclerosis patients, as well as an expert neurologist, as they explore the latest treatments, advancements in medications, and tips for maintaining the best possible quality of life.


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Study looks at family influences in multiple sclerosis

By , June 16th, 2013

Family members may share onset age of multiple sclerosis, but not disease severity.
Sometimes multiple sclerosis (MS) runs in families. It has not been clear how similar the disease is between family members, however. MS is very variable in its symptoms and progression. Researchers at the University of Cambridge report a study which shows how the course of MS varies within families.
The team looked at data on 2,310 individuals from over 1,000 families in which two or more members had MS. They looked at data on age of onset, disability and disease severity. Age of onset tended to be similar between affected members of the same family. This was so whether parents and children or siblings were being compared. Siblings also tended to have similar patterns of progression. But there was no such relationship between parents and children.
There was also no correlation between the severity of the disease in one family member and its severity in another member. The cause of these observations is unknown – the underlying factors could be genetic or environmental. The findings have important implications for counseling patients with MS – they should not look to their relatives with MS for clues to the outcome of their own disease.
Source: NewsFix
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Stem Cells Hold Potential to Repair Immune Responses in MS Patients (Video)

Mesenchymal Stem Cells in Muscle
Mesenchymal stem cells (green) accumulate in skeletal muscle following exercise and release growth factors to spur regeneration. (Photo : Marni Boppart)
Multiple Sclerosis, a potentially debilitating disease in which the immune system is broken down, can be difficult to treat. Damages to the myelin sheath due to the disease can interfere with communication between the brain, spinal cord and other areas of the body. This can create wreak havoc in someone's daily life who is suffering from the problem.
Yet, some researchers believe they have found new treatments that could stop the progression or continuation of the disease.
Dr. Saud Sadiq, MD, who is the director at the Tisch MS Center of New York, believes that stem cells could be the key to repairing and possibly regenerating immune responses broken down by MS.
According to Sadiq, who recently presented his research on stem cells during the Second International Adult Stem Cell Conference at the Vatican in April, believes these new treatments could offer great hope for those suffering from MS.
"We're hoping that stem cells turn on resident stem cells in the brain and can stimulate repair damage in multiple sclerosis patients," Sadiq told Science World Report.
Continue reading  and watch video
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Mother diagnosed with MS and facing life in a wheelchair is cured - after she discovered her symptoms were due to a TICK BITE


Julia Marshall-Wessendorf, 37, was diagnosed with multiple sclerosis in 2010
An MRI scan showed lesions on her brain and spinal cord consistent with MS
Was on expensive drug regime and thought she faced future in a wheelchair
Developed other symptoms inconsistent with MS so did some research
Went to doctor and asked for test for tick-borne Lyme disease
It came back positive so she was treated with a simple course of antibiotics
A mother-of-three who spent two years being treated for multiple sclerosis has been cured with a simple course of antibiotics – after it was revealed that her symptoms were actually caused by a tick bite.

Julia Marshall-Wessendorf, 37, was facing life in a wheelchair after being mistakenly diagnosed with MS, a condition which attacks the central nervous system.

But when her symptoms deteriorated, she carried out her own research and discovered she may have been infected with Lyme disease following a bite from a parasitic tick.

Now, after years of expensive drug therapy and injections for MS, a simple course of antibiotics has cleared all of her symptoms.

Mrs Marshall-Wessendorf's troubles first started in 2010 after she went to her GP complaining of a numb finger two months after the birth of her daughter, Peggy.

She initially thought she had trapped a nerve carrying newborn Peggy around, but when she was sent to a neurologist she began to worry.

An extensive MRI revealed lesions on her brain and spinal cord, consistent with MS.
‘Initially, I was really glad of the diagnosis because MS was a well-recognised illness and a lot of money had been put into researching it and providing medication,’ Ms Marshall-Wessendorf, from from Bath, Somerset.


Read more: http://www.dailymail.co.uk/health/article-2343062/Mother-diagnosed-MS-facing-life-wheelchair-cured--discovered-symptoms-TICK-BITE.html#ixzz2WVhjHhzo
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Thursday, June 13, 2013

UPCOMING MS Views & News - education programs in Florida


JUN
18


JUN
25
Jun 25 - 6:00 pm - 9:30 pm - Estero, Fl.
Treatment Strategies& Symptom Management in Multiple Sclerosis


JUL
16


JUL
22


JUL
23


AUGUST programs to soon be announced.


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New imaging technique holds promise for speeding MS research

Media Release | June 12, 2013
Researchers at the University of British Columbia have developed a new magnetic resonance imaging (MRI) technique that detects the telltale signs of multiple sclerosis in finer detail than ever before – providing a more powerful tool for evaluating new treatments.
A frequency-based MRI image of an MS patient shows changes in tissue structure.
A frequency-based MRI image of an MS patient shows changes in tissue structure.
Download Full Size Image
The technique analyzes the frequency of electro-magnetic waves collected by an MRI scanner, instead of the size of those waves. Although analyzing the number of waves per second had long been considered a more sensitive way of detecting changes in tissue structure, the math needed to create usable images had proved daunting.

Multiple sclerosis (MS) occurs when a person’s immune cells attack the protective insulation, known as myelin, that surrounds nerve fibres. The breakdown of myelin impedes the electrical signals transmitted between neurons, leading to a range of symptoms, including numbness or weakness, vision loss, tremors, dizziness and fatigue.

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Wednesday, June 12, 2013

Treat and Prevent a Multiple Sclerosis Flare-Up

Call it a flare-up, an exacerbation, an attack, or a relapse. Whatever you call it, it's not something you expect. When you have relapsing-remitting multiple sclerosis (MS), you can go days or years without major changes in your symptoms. Then, suddenly, things change.
You'll work closely with your doctor to feel better. You can also reset your schedule to take special care of yourself. Exercise, stretching, and relaxation can help you manage MS symptoms -- and they boost your mood, too.

Symptoms of a True Flare

Here's how to tell if you're having a relapse of MS, when the illness is active again:
  • You develop a new symptom of MS. For example, you’ve never had vision problems before, and suddenly you can’t see clearly out of your left eye.
  • A regular problem gets worse. Maybe you’ve had some numbness in your left leg before, but now you can’t feel anything below your knee.
  • Your symptoms last for 24 hours or longer. A relapse means a change in your brain, called a lesion. "If a symptom lasts less than 24 hours, it’s something transient that’s not related to a new lesion," says Edward Fox, MD, PhD, director of the MS Clinic of Central Texas.
  • Symptoms level off after a while and stop getting worse.
MS flares can last days, weeks, or even as long as a year.
"Then they usually do improve, but recovery can be quite slow," says Bruce Cohen, MD, of the Northwestern University Feinberg School of Medicine. You may recover completely, or you could have some permanent loss of function or sensation.

MS False Alarms and What Causes Them

Sometimes, you may fear you're having a relapse, but a different issue is to blame for your symptoms.  Once the trigger is gone, your symptoms should clear up, too. You can have muscle problems, numbness, or blurred vision after the following triggers:
  • Alcohol. One drink can worsen coordination for some people.
  • Cold or flu. Fever or an infection can feel like a flare-up. MS symptoms go away fairly quickly after the illness passes.
  • Heat or cold. Hot or humid weather, exercise, hot showers, and sunbathing can trigger symptoms such as blurred vision. Cold can bring on spastic muscles.
  • Poor sleep position. Morning numbness that goes away after you shake it out is not likely to be a flare-up, even if it happens every day. You just slept wrong.

Ordinary Fatigue or MS Relapse?

If you’re overworked, stressed, or not getting enough sleep, MS symptoms may trouble you more than usual. Rest and take extra time for yourself to get back on track.
If fatigue goes on even after you’ve rested -- especially if it’s extreme and keeps you from your regular activities -- check with your neurologist. Continued fatigue can be a sign of a flare-up.

How to Prevent a Flare

Nothing can completely prevent relapses of MS. However, starting medicine right after you're diagnosed with MS helps reduce how many flare-ups you have.
In addition to taking your medicine as directed, these steps may help.
  • Closely track your symptoms. "If you notice subtle breakthrough events, it may mean that your medication isn’t working for you, and we need to make a change," says Cohen.
  • Stop smoking. "Smoking is extremely bad for MS," says Fox. Smokers lose brain tissue much faster than those who don't smoke, he says.  Ask your doctor about nicotine patches, gums, or lozenges. They don't seem to cause the same damage as tobacco and can help you kick the habit.
  • Live healthy. Eat a balanced diet. Exercise most days of the week. Try to lower the stress in your life. You'll be healthier, which may make it easier to manage MS. Working out and relaxation may also help control your symptoms.

Treatments

Ask your neurologist how quickly you should call when you notice new symptoms. Some may require more than simply getting extra rest or using other coping strategies on your own.
These are the ways your doctor will usually treat a flare-up.
  • Steroids. If you've lost some vision or suddenly can't walk, your doctor may suggest this type of drug. "Steroids [help] make the patient better faster," says Mark Keegan, MD, of the Mayo Clinic. You'll need an IV for three to five days, or a lot of pills over a few days.
  • Physical therapy. These precise exercises help you recover the use of a hand or leg. Fox says PT works especially well while you're taking steroids.  The combination helps you get back to your normal strength and motion.
  • Plasma exchange. This may help treat a severe flare-up -- for example, you were walking fine and now you can’t walk at all -- when high-dose steroids aren’t working.
With plasma exchange, some of the blood is removed from your body. Your blood cells are separated from your plasma. The blood cells are then mixed with another fluid that replaces the plasma and transfused back into your body. Doctors think it helps some people because it removes antibodies in the plasma that may cause problems in MS.   
  • Watchful waiting. When symptoms are annoying but not severe, like a little numbness in your hand, you may choose to just watch them closely and see if they get better.
Talk with your doctor about what's right for you. You both may decide to avoid the hassle and side effects of steroids and just wait for the flare-up to go away.
"Steroids speed the healing of a relapse, but they don’t create healing that wouldn’t have occurred otherwise," Fox says. So you’ll recover just as much -- or as little -- without the steroids as you would with them.
Take care of yourself during a flare-up. "If it feels like you need more sleep, get more sleep," Fox says. But don't remain completely still. While the flare may limit your activities, you can -- and should -- still go about your daily business as much as possible. Maintain a healthy lifestyle, and pay attention to the signals your body is sending.

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Multiple Sclerosis and Stress Management

The prolonged stress of living with a chronic illness, like multiple sclerosis, can lead to frustration, anger, hopelessness, and depression. People with MS are especially at risk of becoming depressed, and for good reason: they face many stressors.
To better cope with the disease, it is important to learn how to manage stress. The first step is to recognize when you are stressed and then take steps to reduce your stress.

What Are the Warning Signs of Stress?

Your body sends out physical, emotional, and behavioral warning signs of stress:
  • Emotional warning signs include anger, an inability to concentrate, unproductive worry, sadness, and frequent mood swings.
  • Physical warning signs include stooped posture, sweaty palms, chronic fatigue, and weight gain or loss.
  • Behavioral warning signs include overreacting, acting on impulse, using alcohol or drugs, and withdrawing from relationships.

What Can I Do to Reduce Stress?

  • Keep a positive attitude.
  • Accept that there are events that you cannot control.
  • Be assertive instead of aggressive. Assert your feelings, opinions, or beliefs instead of becoming angry, combative, or passive.
  • Learn relaxation techniques (see below).
  • Exercise regularly. Your body can fight stress better when it is fit.  Talk to your doctor before starting an exercise program.
  • Eat well-balanced meals.
  • Rest and sleep. Your body needs time to recover from stressful events.
  • Don't rely on alcohol or drugs to reduce stress.

How Can I Learn to Relax?

There are a number of exercises that you can do to relax. These exercises include breathing, muscle and mind relaxation, and relaxation to music. Three that you can try are listed below.
First, be sure that you have:
  1. A quiet location that is free of distractions
  2. A comfortable body position; sit or recline on a chair or sofa.
  3. A good state of mind.; try to block out worries and distracting thoughts.
Two-minute relaxation: Switch your thoughts to yourself and your breathing. Take a few deep breaths, exhaling slowly. Mentally scan your body. Notice areas that feel tense or cramped. Loosen up these areas. Let go of as much tension as you can. Rotate your head in a smooth, circular motion once or twice. (Stop any movements that cause pain.) Roll your shoulders forward and backward several times. Let all of your muscles completely relax. Recall a pleasant thought for a few seconds. Take another deep breath and exhale slowly.
Mind relaxation: Close your eyes. Breathe normally through your nose. As you exhale, silently say to yourself the word "one," a short word such as "peaceful," or a short phrase such as "I feel quiet." Continue for 10 minutes. If your mind wanders, gently remind yourself to think about your breathing and your chosen word or phrase. Let your breathing become slow and steady.
Deep-breathing relaxation: Imagine a spot just below your navel. Breathe into that spot and fill your abdomen with air. Let the air fill you from the abdomen up, then let it out, like deflating a balloon. With every long, slow breath out, you should feel more relaxed.

Source - WebMD

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NPR News: A Delay In Relief From Copays For Costly Drugs


by MICHELLE ANDREWS
June 11, 2013


For people with a chronic or serious illness, drugs that can help slow or cure the disease often put a financial strain on even the best insurance coverage.

The Affordable Care Act sets annual limits on the amount that people will owe out of pocket for prescription drugs starting in 2014. But sick people in some plans won't get relief until the following year because the federal government is giving some health plans extra time to comply.

"People living with multiple sclerosis and other chronic illnesses have been counting on this annual out-of-pocket limit coming, and now that may not happen in 2014," says Bari Talente, executive vice president of advocacy at the National Multiple Sclerosis Society.

Drugs to treat multiple sclerosis are frequently on an insurer's specialty drug tier and require a person to pay 25 to 30 percent of the cost rather than a fixed copayment, she says. In such cases, someone might spend roughly $700 out of pocket every month — $8,400 a year — on a drug to slow progression of the disease.

Under the law, the maximum amount that a consumer with single coverage will pay out of pocket for all medical care, including drugs, will generally be $6,350 in 2014. A family could pay as much as $12,700.

Those totals include copayments, coinsurance and deductibles, but not premiums, and they apply only to plans that are not grandfathered under the law.

But for those consumers whose health plans use more than one administrator to manage plan benefits — one for major medical claims and coverage, and another for pharmacy, for example — there may be one out-of-pocket cap for major medical and another for drugs, or no drug spending limits at all if a plan doesn't currently have a cap, as is typical.

The administration said in February that it recognized that the new annual out-of-pocket limits would need to be coordinated and might require new communication between service providers. That communication step is the reason the government gave the health plans extra time to comply.

But what's good for health plans isn't necessarily good for patients. "For those who are going to be hit with a double out-of-pocket maximum, it could be problematic," Talente says.

Article Source: NPR News
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Personalised Therapy For Multiple Sclerosis Is Key Factor In Treatment Success

June 11, 2013

"Although the upcoming approval of new drugs against multiple sclerosis will offer a number of additional treatment options, it is important that we keep one thing in mind: The only way we can get this disease well under control is if we manage to provide personalised therapy tailored to the individual and to predict the effects and side-effects of a given drug. Unfortunately these efforts are still in the early stages of development," Prof Xavier Montalban (Multiple Sclerosis Centre of Catalonia, Spain) explained at the 23rd Meeting of the European Neurological Society (ENS) in Barcelona. More than 3,000 experts are currently gathered there to discuss latest developments in their field. 

Prof Montalban urged that more pharmacologic research be done on biomarkers and that physicians cooperate more closely with patients to optimise therapy. Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system characterised by a high degree of heterogeneity. The clinical course of the disease and its degree of severity can vary widely from one individual to the next. It is now known that one and the same treatment can yield very different therapeutic results. Prof Montalban: "Despite an awareness of this problem, personalised therapy was not an issue for a long time, not least because of the lack of options. This situation could well change in the near future." 

Highly effective drugs but a host of risks
We are seeing the end of a "one drug fits all" approach to multiple sclerosis therapy, said Prof Montalban. "Myriad new treatment options are becoming established right now. There is a well-founded hope that we will be able to help people suffering from MS more effectively and more quickly in future. We were familiar with this disease for 120 years without being able to treat it. For 15 years, drugs have been available without noteworthy side-effects but limited in their effectiveness. In the meantime a number of highly effective drugs have been put on the market. However, they involve risks ranging from hair loss and bradycardia to progressive multifocal leukoencephalopathy (PML). PML is a dangerous viral infection caused by the immune-suppressive effect of some drugs and can have fatal consequences. Prof Montalban: "In the meantime a test has been developed for determining the probability of patients to develop PML. This is a welcome step in the right direction. The genetic causes of the varying effectiveness of individual types of drugs are becoming increasingly clear." Interferon ?, the first disease-modifying drug that was approved, is effective on 20 to 55% of patients depending on the criteria applied. This fact has led science to make great efforts to find biomarkers that reliably indicate successful treatment and side-effects. Prof Montalban: "Right now we are at 100 possible biomarkers without a clear tendency. This shows how complex MS research is and how far we still have to go to achieve personalised medicine." 

Danger of changing or stopping therapy
Under certain circumstances, more pharmacogenetic findings could enable experts to predict the consequences of switching therapies. The medical field remains in the dark on many aspects of this issue too, to the detriment of those affected. A Catalonian study presented at the ENS Meeting shows how problematic it can be to switch therapies. After five years suffering from MS, the seven study participants were medicated with the highly effective disease-modifying drug natalizumab because the previous treatment had failed. Their state of health remained stable for the average period of about 2.5 years they took this substance. They then had to switch to other weaker drugs for reasons varying from PML risk to pregnancy and allergic reactions. Despite the alternative medication, the patients' neurological state deteriorated quickly. After about three months, four of the seven subjects exhibited new lesions and two of the seven were even found to have sustained 40 new injuries to the central nervous system. A mere eleven months later, all patients had 40 to 70 new lesions. Prof Montalban: "When patients stop taking drugs like natalizumab, they can suffer disastrous relapses with a more aggressive disease than before. It is therefore urgent that we devise strategies to ensure greater continuity. This task extends beyond pharmacogenetics and requires a holistic approach to treatment." 

New treatment guidelines take individual factors into account
Evidence-based treatment guidelines on MS therapy are now being thoroughly updated in a project under Prof Montalban's aegis and with the support of numerous national societies in this field. This revision takes account not only of the many pharmacological innovations such as oral therapies or drugs based on monoclonal antibodies. It also puts special emphasis on the many individual factors that personalise a therapy and make it more successful. These factors include thoroughly advising and informing the patients before treatment begins so they can decide on a therapy option and take part in carrying it out. To this end, the new guidelines also provide informational material for patients. Prof Montalban: "Initially, very fundamental questions have to be clarified: What do patients consider a successful therapy to be? What would they rather accept in this therapeutic tightrope walk: severe side-effects or early disablement? Are women planning to have children?" The decisive factor after that is to monitor and if need be, adapt the successful therapy. Prof Montalban: "To be successful, each therapy decision must be made in close consultation with the patients. Today, a patient-centred approach is more possible than ever before. That is because MS breaks out mostly in young adults aged 20 to 40. As a general rule, this group is digitally competent and can use the Internet to keep in constant contact with the physicians treating them. The extensive involvement of the patients is especially important with MS to increase compliance." Prof Montalban hopes the new guidelines will be implemented quickly and create greater awareness for personalised therapy options amongst general practitioners and neurologists. 

The source for the above article is Medical News Today


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Tuesday, June 11, 2013

Big Multiple Sclerosis Breakthrough Reduced 50-75% of bad immune system activity while leaving a normal immune system

 A phase 1 clinical trial for the first treatment to reset the immune system of multiple sclerosis 

JUNE 10, 2013

(MS) patients showed the therapy was safe and dramatically reduced patients’ immune systems’ reactivity to myelin by 50 to 75 percent, according to new Northwestern Medicine research.

In MS, the immune system attacks and destroys myelin, the insulating layer that forms around nerves in the spinal cord, brain and optic nerve. When the insulation is destroyed, electrical signals can’t be effectively conducted, resulting in symptoms that range from mild limb numbness to paralysis or blindness.

“The therapy stops autoimmune responses that are already activated and prevents the activation of new autoimmune cells,” said Stephen Miller, the Judy Gugenheim Research Professor of Microbiology-Immunology at Northwestern University Feinberg School of Medicine. “Our approach leaves the function of the normal immune system intact. That’s the holy grail.”

The human trial is the translation of more than 30 years of preclinical research in Miller's lab. 

In the trial, the MS patients’ own specially processed white blood cells were used to stealthily deliver billions of myelin antigens into their bodies so their immune systems would recognize them as harmless and develop tolerance to them. 

Current therapies for MS suppress the entire immune system, making patients more susceptible to everyday infections and higher rates of cancer.

While the trial’s nine patients -- who were treated in Hamburg, Germany -- were too few to statistically determine the treatment’s ability to prevent the progression of MS, the study did show patients who received the highest dose of white blood cells had the greatest reduction in myelin reactivity. 

The primary aim of the study was to demonstrate the treatment’s safety and tolerability. It showed the intravenous injection of up to 3 billion white blood cells with myelin antigens caused no adverse affects in MS patients. Most importantly, it did not reactivate the patients’ disease and did not affect their healthy immunity to real pathogens.

As part of the study, researchers tested patients’ immunity to tetanus because all had received tetanus shots in their lifetime. One month after the treatment, their immune responses to tetanus remained strong, showing the treatment’s immune effect was specific only to myelin. 

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Physician Overcomes Multiple Sclerosis; Inspires Others - a Patient's story

Dr. Francis Biagioli, who was diagnosed with MS in December 2000, recently became president of the Oregon Medical Association.
By: 
 Diane Lund-Muzikant

June 10, 2013 – Fear engulfed Dr. Frances Biagioli when she was diagnosed with multiple sclerosis after noticing some strange feelings in her left leg, as if her knee would give out. A young mother with two children under the age of 3, she knew the disease could leave her paralyzed. She feared the loss of independence, being a burden, losing her cognitive ability.
“I am now a patient, the tables are turned,” she wrote, shortly after being diagnosed. “My medical knowledge doesn't help. It hurts. The doctors assume I do not need the explanations. I can adequately answer my family's questions. I do not need hand-holding. I think of the patient who is stunned by his/her new diagnosis, hears nothing of what the doctor says, and has a million remaining questions. I understand.”
The treatment she endured was painful, as she injected medicine into her thigh with a long cold needle, her muscle twitching involuntarily. “A medication that is the only hope. A chance to improve long-term disability. This only hope instills fear. I think of the diabetic who self-punctures several times a day. I understand.”
It's been 13 years since Biagioli learned she had MS. Today she has only mild symptoms, occasional fatigue. For that she's thankful. An activist, she joined her colleague, Dr. Elizabeth Steiner Hayward (a state senator who also has MS) in the Mud Run sponsored by the National Multiple Sclerosis Society. “I think it’s hopeful — especially for people who are recently diagnosed — to know there are people who aren’t in wheelchairs who have MS,” she said.
What's more the experience has given her a much deeper understanding of how her patients feel when they’re told similar news. “Your mind shuts down when you hear the bad stuff,” said Biagioli, a family physician who practices at OHSU's Gabriel Park Family Health Center. “Now I'm able to connect with a wider variety of people, I can see things from their viewpoint, having been in their shoes, and from a personal perspective telling them how I made it through. Multiple sclerosis is very unpredictable. One minute you're fine, the next you might not be able to walk.” ”
Biagioli has also become a leader in Oregon's medical community. At 45, she's one of the youngest physicians to become president of the Oregon Medical Association, and is inspiring others to make a difference.
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