Myasthenia Gravis Awareness

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THE GOOD OLD DAYS

The Good old days for some might have been when you were a child. Under most circumstances I would agree. But for me the good old days are when I had the energy and the strength to do anything I wanted. For me that is my Pre-Mayasthenia days. I cannot speak for most people. But I feel I have had Myasthenia long before  I was diagnosed. Although prior to diagnosis I lived my life like I thought it was normal. I made adjustments for my lack of energy. And supplemented with coffee when ever needed. But I was able to hold down 2 jobs and raise 4 children without the help of their father or Government assistance. The good old days! Now I long for the days when my butt seems  NOT to be glued to the chair. And it appears I cannot seem to get going. I must admit that I do not have the energy lapse everyday. But on the days that I do. It frustrates me so when I can not physically  perform the duties I want to do. It is when I really feel Handicapped. Wow I said handicapped. But that is how I feel when I can not accomplish a task. I continue to have the drive and desire to excel as always. But even when I am having a great day I pay for it later. So today is one of the payback days. I understand it,but I just don't agree with it.....lol.. But it prompted me to write this post..... I just had to share........Awwww...... THE GOOD OLD DAYS!

New cause found for muscle-weakening disease myasthenia gravis

New cause found for muscle-weakening disease myasthenia gravis

Posted By News On November 11, 2013 - 4:31pm

Augusta, Ga. – An antibody to a protein critical to enabling the brain to talk to muscles has been identified as a cause of myasthenia gravis, researchers report.
The finding that an antibody to LRP4 is a cause of the most common disease affecting brain-muscle interaction helps explain why as many as 10 percent of patients have classic symptoms, like drooping eyelids and generalized muscle weakness, yet their blood provides no clue of the cause, said Dr. Lin Mei, Director of the Institute of Molecular Medicine and Genetics at the Medical College of Georgia at Georgia Regents University.
"You end up with patients who have no real diagnosis," Mei said.
The finding also shows that LRP4 is important, not only to the formation of the neuromuscular junction – where the brain and muscle talk – but also maintaining this important connection, said Mei, corresponding author of the paper in The Journal of Clinical Investigation.
Mei and his colleagues first reported antibodies to LRP4 in the blood of myasthenia gravis patients in the Archives of Neurology in 2012. For the new study, they went back to animals to determine whether the antibodies were harmless or actually caused the disease. When they gave healthy mice LRP4 antibodies, they experienced classic symptoms of the disease along with clear evidence of degradation of the neuromuscular junction.
LRP4 antibodies are the third cause identified for the autoimmune disease, which affects about 20 out of 100,000 people, primarily women under 40 and men over age 60, according to the National Institutes of Health and Myasthenia Gravis Foundation of America, Inc.

This is Dr. Lin Mei, Director of the Institute of Molecular Medicine and Genetics at the Medical College of Georgia at Georgia Regents University.
(Photo Credit: Phil Jones)

An antibody to the acetylcholine receptor is causative in about 80 percent of patients, said Dr. Michael H. Rivner, MCG neurologist and Director of the Electrodiagnostic Medicine Laboratory, who follows about 250 patients with myasthenia gravis. Acetylcholine is a chemical released by neurons which act on receptors on the muscle to activate the muscle. More recently, it was found that maybe 10 percent of patients have an antibody to MuSK, an enzyme that supports the clustering of these receptors on the surface of muscle cells.
"That leaves us with only about 10 percent of patients who are double negative, which means patients lack antibodies to acetylcholine receptors and MuSK," said Rivner, a troubling scenario for physicians and patients alike. "This is pretty exciting because it is a new form of the disease," Rivner said of the LRP4 finding.
Currently, physicians like Rivner tell patients who lack antibody evidence that clinically they appear to have the disease. Identifying specific causes enables a more complete diagnosis for more patients in the short term and hopefully will lead to development of more targeted therapies with fewer side effects, Rivner said.
To learn more about the role of the LRP4 antibody, Mei now wants to know if there are defining characteristics of patients who have it, such as more severe disease or whether it's found more commonly in a certain age or sex. He and Rivner have teamed up to develop a network of 17 centers, like GR Medical Center, where patients are treated to get these questions answered. They are currently pursuing federal funding for studies they hope will include examining blood, physical characteristics, therapies and more.
Regardless of the specific cause, disease symptoms tend to respond well to therapy, which typically includes chronic use of drugs that suppress the immune response, Rivner said. However, immunosuppressive drugs carry significant risk, including infection and cancer, he said.
Removal of the thymus, a sort of classroom where T cells, which direct the immune response, learn early in life what to attack and what to ignore, is another common therapy for myasthenia gravis. While the gland usually atrophies in adults, patients with myasthenia gravis tend to have enlarged glands. Rivner is part of an NIH-funded study to determine whether gland removal really benefits patients. Other therapies include a plasma exchange for acutely ill patients.

Source: Medical College of Georgia at Georgia Regents University

Emergency Room Prep

Emergency Room Prep

• Get the facts from your doctor. During a regular visit, have an “emergency” conversation with your MDA clinic physician and specialists (pulmonary, cardiac, etc.). Ask what symptoms should be taken seriously, and what kinds of special circumstances might come up in the emergency room. Find out where your regular doctors have hospital privileges, so if you have a choice of emergency rooms, you can go there. Ask if you can call them while en route to the ER. If you’re at a hospital where your regular medical team doesn’t have privileges, the ER staff may be willing to reach out to them anyway.
• Have an advance directive. The “Five Wishes Living Will” document can be a good starting point. Call (888) 594-7437 for more information.
• Put important information all in one place. Prepare a folder that can be quickly grabbed in an emergency, containing all necessary insurance information; medical diagnosis; doctors’ names and contact info; current prescriptions and supplements; and any recent test results.
• Have remote access to your medical information. To contact the MedicAlert service described in the main article, call (888) 633-4298. Small, portable memory-stick-type devices can be loaded with personal medical info and carried in a purse or on a keychain. Check out MedicTag (medictag.com) and MedIDCard (877-916-3343). Each costs less than $50.
• Bring a friend or relative. They can provide comfort and distraction, advocate for you with medical staff, and take notes on all procedures, medications and tests — helpful if you have questions later or want to challenge your bill.
• Prepare for a long wait. A book or personal music player can make the time pass faster. Parents, remember to bring your child’s favorite lovey or blankie; it can significantly reduce their stress. Bring a little cash, so parents or buddies can have a cup of coffee or sandwich. (But don’t give any food or liquids to the patient without permission from the ER doctor.) And don’t forget a cell phone and charger!
• Speak up. Whether you’re in the waiting room or inside an ER examining room, tell the ER staff about ANY change in your condition. They aren’t mind readers and might not realize your status has changed if no one tells them.

A Dozen Ways to Ask for Help

by Barbara and Jim Twardowski on October 1, 2010 - 4:45pm

QUEST Vol. 17, No. 4

 

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I was taught it is better to give than to receive. Don’t ask for handouts. Pull your own weight.
All my life, I told myself, “You are only handicapped if you allowed yourself to be handicapped.” That belief worked for me when I could still stand and walk. Now that my legs don’t function and my hands are extremely weak, I recognize that my physical being has limitations. I have readjusted my self-perception and understand that I need people to help me.
Having lived through Hurricane Katrina (half our home was destroyed by the storm), I have had a crash-course in accepting the assistance of the U.S. government, the Red Cross, my church, friends, family and strangers. For a few weeks, my family lived out of state. Although we owned a home, we felt homeless. It took nearly eight months to rebuild our house. During that time, I was depressed, scared, frustrated and angry. People helped us move furniture, prepared meals for my family, invited us to their homes for dinners, taxied our son and supported me emotionally through one of the most difficult periods of my life.
When the house was repaired, the support ended. However, my disease progressed. Unlike a national disaster, my difficulties have not been broadcast on the evening news. My dependence on my husband, Jim, has gradually increased. He not only cares for me, but has taken on more of the household chores. Like nearly 50 million people in the U.S., Jim is a family caregiver.
I am having trouble with daily living skills (dressing, bathing, transferring, food preparation and more). Jim does not complain about his added responsibilities, but I can see the extra work is stressful. Our family may be approaching a major disaster, but no one is rushing to our aid.
Most people find it difficult to ask for help. Even when well-intentioned friends offer to help, I’m not sure how to respond. I feel embarrassed.
In the book, Mayday! Asking for Help in Times of Need (Berrett-Koehler Publishers, 2007), author M. Nora Klaver says there are several reasons why people wait until they are desperate to seek assistance. People are uncomfortable and afraid to ask. We value our independence and no one taught us how to ask for help. She says that we don’t recognize that we have a need until we are in a crisis. Often, we are unclear about exactly what we need, or we ask the wrong person to help fulfill our request.

A young neighbor who enjoys cooking assists the author occasionally in the kitchen.

Learn how to ask for help
Klaver’s book details a seven-step “Mayday! Process.” The first step is “name the need.” Be specific about the need and be open to possibilities. This may sound simple, but it will take some analysis of your situation.
Begin by making a list of the areas where you need a hand, such as transportation, household chores, running errands, yard work, pet care. Prioritize the list. What can be delegated to a service? Perhaps you can hire a housekeeper or teenager to mow the lawn. What needs could be met with volunteers?
Besides looking at my needs, I also consider what would make life easier for Jim. In our home, we need help with meals. Although Jim enjoys cooking, he can’t prepare dinner on the days he works a 12-hour shift. Dining out is great, but our budget is limited.
Dennis Botts, a retired social worker and former director of the Rapides Regional Medical Center located in Alexandria, La., accepted meals from his church when he was recovering from cancer, and also received tremendous support from his professional peers. Botts, who recruits volunteers for the Red Cross, offers these words of advice: “Networking isn’t formal. It is informal. Getting what you need — at the level you need — takes bulldog persistence. Get over the problem of asking for help. Tell them what you need. They won’t say, ‘No.’”

12 ways to ask for help
1. Brainstorm solutions with friends and family. That’s how we came up with several ways to arrange affordable meals and take the pressure off Jim. On Wednesday nights, we attend a church supper and eat for $8. A family in our town cooks and delivers meals, so occasionally we buy their entree of the week. Once or twice a month, I cook with the assistance of a 10-year-old neighbor, Heather, who has earned her Girl Scout cooking badge and taken cooking lessons. With Heather’s assistance, I’ve made a variety of soups, casseroles and desserts. Another friend has offered to cook us a complete meal once a week, and we will pay her for the ingredients. During the summer and holidays, we turn the kitchen over to our college-age son’s capable hands.

2. Build a support network. Make a list of everyone you know. Talk to friends, neighbors and family members, matching their interest and talents to your needs. Connect and reconnect with friends and family. Look for ways to meet new people by joining a class or volunteering. If possible, meet with each person individually to discuss how she or he can help.

3. Build a support network that also assists your family caregiver. “We should worry about the caregivers,” says Botts. “Caregivers get sick, tired and depressed.”

4. Tap into service organizations. I’ve gotten help from a local Girl Scout troop and teenagers who needed to fulfill service hours for their school.

5. Use a care coordination service like myMuscleTeam. I created a support group e-mail list and send weekly notices telling the “members” what days Jim is working. If I would like to tackle a particular project, I explain what it is and ask for volunteers. MDA recently created a more formal tool to accomplish this: the myMuscleTeam care coordination service. You — or your caregiver — create a calendar of needs and then people who want to help can join your “community.” To learn more, visit mda.org and click on myMuscleTeam. The service is free.

6. Keep a list of how others can assist you. I write everything down, from changing a light bulb to picking up a loaf of bread. That way I’m ready if a friend calls me before running an errand. My friends don’t mind picking up a carton of milk or my dry cleaning, especially when it’s a trip they planned to make. If someone purchases an item for you, pay them when they deliver it.

7. Create short jobs. For example, I told a few neighbors and close friends that I needed “15-minute favors” on the days that Jim works. In 15 minutes, someone can unload a dishwasher, put the trash out, walk a dog or help me file mail.

8. Copy what other folks are doing. It’s one of the best ways to begin finding help, says Botts. Attend your local MDA support group and talk to people, or join myMDA, MDA’s online community, to meet people with neuromuscular diseases and their caregivers from all over the country. Ask them how they manage.

9. Dial 211 to find community services. This program is available in 46 states. 

10. Review MDA’s list of services by state. This extensive list of government and nonprofit agencies, broken down by state, can be found on MDA’s website.
11. Think outside the box. For example, even if you’re not a senior citizen, you might be eligible for the services available to them, such as transportation. Perhaps you need a ramp built and don’t have the funds to hire a carpenter. Call your local builder’s association, and ask if they have a community outreach program.

12. Be grateful for the help you receive — and express your gratitude. Send thank-you cards to helpers. Host a dinner (order takeout) to recognize the people who make your life easier. “People like to be of service,” says Botts. “You don’t want to deny them a good time.”

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Vaccine Risk to Myasthenia Gravis Patients May be Worth Taking

Released: 10/16/2013 9:00 AM EDT
Source Newsroom: American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM)

more news from this source

Newswise — A study presented at the annual meeting of the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) is considered a good first step in collecting data on vaccine-preventable illnesses in patients with myasthenia gravis, a neuromuscular disorder causing weakness and rapid fatigue of voluntary muscles.

“This research is important because there is very little existing data to guide physicians in recommending vaccination for patients with myasthenia gravis,” said Andrew Tarulli, MD, AANEM News Science Editorial Board member.

“Physicians, particularly primary care physicians, may undervaccinate their myasthenic patients because they may be concerned about the possibility of provoking an exacerbation. On the contrary, failure to vaccinate a patient may result in pneumonia or influenza, both of which are common precipitants of myasthenia exacerbations or even myasthenic crises,” said Dr. Tarulli.

The AANEM committee members reviewing the research agreed that it is a good first step in collecting data on vaccine-preventable illnesses and should be followed by studies documenting the safety of vaccination conducted in larger cohorts. The ultimate goal would be to produce a set of guidelines for neuromuscular physicians who treat myasthenics.

The study, entitled, Prevalence of Vaccine Preventable Infections in Myasthenia Gravis and its Exacerbations,was conducted by Crystal Dixon, MD, a neurology resident at the University of South Florida. Dr. Dixon received the Best Abstract Runner-Up award from the AANEM for her research.

About AANEM
Founded in 1953, the AANEM is a nonprofit membership association dedicated to the advancement of neuromuscular and electrodiagnostic medicine. Nearly 5000 physician members—primarily neurologists and physiatrists—allied health professionals, and PhD researchers work together to improve the quality of medical care provided to patients with muscle and nerve disorders. AANEM programs are guided by its five pillars: education, professional standards, advocacy, communications, and research. Its administrative office is located in Rochester, MN.

Flu Season Tips

 

Individuals affected by neuromuscular disease are at increased risk of serious and possibly life-threatening complications from the flu, so it's important that everyone stays informed and takes steps to protect themselves and their families. Be sure to visit MDA's Flu Season Resource Center to learn more.
In addition to receiving a flu vaccine, there are many other ways to protect yourself and those you love from exposure to influenza, including: by Quest Staff on October 3, 2013 - 9:23am

• Educate family members and roommates about the heightened risk of seasonal and H1N1 influenza for those with neuromuscular disease, and the importance of staying away from others who are experiencing flulike symptoms.

• Promote good hand hygiene among everyone in your home, which means washing hands with soap and water for at least 20 seconds (the time it takes to sing “Happy Birthday” twice), especially after coughing or sneezing. Alcohol-based hand sanitizers containing at least 60 percent alcohol also are effective. Encourage everyone in your home to practice respiratory etiquette by covering coughs and sneezes with tissues or with your arm. Dispose of tissues in a waste receptacle after use.

• Among your roommates and/or immediate family members, stress the importance of not sharing utensils and drinking cups, and encourage them to avoid touching their faces, especially after handling shared items such as telephones or remote controls.

• Educate yourself about symptoms of the flu — fever, cough, sore throat, body aches, chills and fatigue. Diarrhea and vomiting also may be experienced. Contact your physician as soon as possible if you develop flulike symptoms.

• Visit the CDC’s website and Flu.gov for additional tips and recommendations. Be prepared It’s also a good idea to be prepared in case you get the flu. For example:

• Make sure you have an adequate supply of prescribed medications on hand in the event you’re unable to leave the house because of illness.

• Make sure that your medicine cabinet is stocked with necessary health supplies, including fever-reducing medications, a thermometer, hand sanitizer for family members or roommates, etc.

If you have young children at home or you care for someone with neuromuscular disease, start a list of friends and family members who would be willing to help you at home in the event you contract the flu

Going to the Emergency Room:

 Tips for People with Neuromuscular Diseases by Donna Albrecht on July 1, 2011 - 4:18pm

When a medical emergency strikes — and the patient is a person with a neuromuscular disease — it’s not just getting to the emergency room quickly that’s critical. It’s also critical to ensure the ER staff understands the patient’s special needs caused by muscle disease.
“Most ER doctors will NOT understand these diseases,” states Gregory Carter, medical director of the MDA Regional Neuromuscular Center at Providence St. Peter Medical Center in Olympia, Wash., and co-director of the MDA/ALS Center at the University of Washington Medical Center in Seattle.
“Because of that, a respiratory patient can end up with an unwanted tracheostomy when an ER doctor pushes for aggressive care,” Carter says, noting that this has happened to several of his patients with Duchenne muscular dystrophy (DMD), spinal muscular atrophy (SMA) and ALS (amyotrophic lateral sclerosis).
Respiratory problems are the top reason that people with neuromuscular diseases go to the emergency room, says Carter. Other common problems are dehydration and constipation/abdominal pain.
But the biggest danger at the ER may not be the problem you go in with, but the problem you get there. Besides the aforementioned unwanted tracheostomy (insertion of a breathing tube through the front of the throat), individuals in respiratory distress may be given supplemental oxygen, even though their problem is not caused by lack of oxygen but by weak respiratory muscles. Too much unnecessary oxygen can cause a potentially life-threatening suppression of breathing.
In addition, certain muscle diseases (including some muscular dystrophies, central core disease and multi-minicore disease) can cause a dangerous reaction to anesthesia called malignant hyperthermia.
Some neuromuscular disease symptoms can lead to serious misunderstandings in the ER, warns Michele Dressman, a pediatric nurse in the emergency room at John Hopkins Hospital, Baltimore, and longtime head of an MDA summer camp medical team.
For instance, she’s found that people with Friedreich’s ataxia often have slurred speech, leading ER providers to suspect drug or alcohol abuse. Or, a person whose neuromuscular disease causes floppy extremities and a lack of reflexes may be sent for a full spinal work-up looking for injuries. A young adult with advanced DMD who is complaining of abdominal pain may be treated for stomach problems but actually may be experiencing a cardiac event.
The best strategy for going to the emergency room is to be prepared before the emergency strikes. To that end, here are some tips from medical experts, and adults and parents of children with neuromuscular diseases.

Provide updated and complete medical information

Lights & Sirens!

Many people believe that if you arrive at the hospital in an ambulance, you go straight to the front of the line. Not so, says Michele Dressman, pediatric ER nurse at Johns Hopkins Hospital in Baltimore and longtime head of an MDA summer camp medical team. However you arrive, you will be evaluated and you may have to wait. Dressman says that how soon you’re seen will depend on your symptoms and history. If you have a complicated history, you will probably get quicker attention. If you do call an ambulance, find out in advance which hospital it will take you to. If you normally receive care at a major medical center and the ambulance takes you to a community hospital, physicians there may not be as experienced in your disease. It also can help to know the protocols and reputations of area medical facilities — for example, some hospitals are known to perform more tracheostomies than others. When speed is of the essence, you may not have a choice of ER, but if you do, knowledge can be power. People with neuromuscular diseases commonly go to the ER with respiratory problems. Keeping medical history records current helps to make an emergency room visit successful.

One ER physician who understands neuromuscular disease and why it sends many to the ER is Anne Rutkowski, a full-time ER physician in Harbor City, Calif., and the parent of a daughter with congenital muscular dystrophy.
In order to communicate effectively with health providers in an emergency, Rutkowski recommends MedicAlert, the gold standard for getting personal health information into the hands of paramedics and ER staff.
The distinctive MedicAlert bracelets or necklaces spell out diagnosis and allergies, and provide a phone number for accessing more detailed information like medication lists and personal physicians.
But, warns Greg Adams, director of educational services for MedicAlert, keeping MedicAlert records current is vital to getting the best results in an emergency. When ER doctors call the service, they get both the information and the date when it was last verified. Adams says providers look for information that is less than 1 year old and prefer information that’s been confirmed in the last 90 days. This means updating MedicAlert records every time you get a new prescription, stop a medication, or get a new diagnosis or physician.

Buddy up: Take an advocate to the ER

Even when ER patients can talk for themselves, it helps to have someone else there — a spouse, parent or friend — to remind medical staff that the patient has muscular dystrophy, not multiple sclerosis; no, she can’t get up on the bed by herself; no, he can’t lie flat, he has contractures; and so on. And a buddy can push the nurse call button if the patient can’t.
Having a companion ensures that not only does the ER staff know about any special concerns, but so does the lab or X-ray staff. For Mary Sammons of Enterprise, Ore., who has limb-girdle muscular dystrophy, the misunderstanding began when the X-ray staff put her in a chair with wheels, but apparently no brakes. “The chair slipped out from under me when I tried to transfer and I was clinging on for dear life to the X-ray machine while three others where trying to get me back in the wheelchair,” she recalls ruefully.
Besides having a buddy, continue to be a self-advocate, advises Annie Kennedy, MDA senior vice president for advocacy. “You know what’s normal for you. Many ER docs don’t know neuromuscular diseases well and may minimize symptoms that are actually quite significant. If something isn’t right and your gut tells you so, advocate until someone pays attention to you.”
And remember: Although providers usually are happy to allow an advocate to stay with an ER patient, this is a courtesy. If the buddy, spouse or parent becomes emotionally overwhelmed or verbally abusive, they probably will be shown the door back to the waiting room.

Advance directives speak for you

There is a document you must prepare if you want to be sure your wishes are followed in a life-or-death situation. Advance directives are available online, but be sure to get one that’s recognized in your state. They contain several parts:

• a medical power of attorney, designating the person (and possible backups) who can make medical decisions if you’re unable to speak for yourself;
• specifications about how much (if any) life support you want, the level of pain management you want; and whether you want to donate some or all of your body; and
• the name and contact information of the physician you want to handle your medical care.

Many MDA families use the Five Wishes Living Will. The document (which costs about $5) can be customized and translated into 26 languages and meets the legal requirements in 42 states. Not only is it useful in emergencies, but it can help families start important-but-difficult discussions about care in times of serious illness.

It’s not all bad

Although ER providers aren’t always current on neuromuscular conditions, you might be surprised by how much they can teach their patients, or their parents and buddies.
For example, one night shortly after my daughter with SMA received a tracheostomy, her appliance started to block and I was having trouble clearing it. Since it was about time to replace the surgical trach with a removable/cleanable one, the ER doctor took the time to teach me what needed to be done and supervise me as I changed her appliance.
Definitely scary — but extremely helpful.
Sometimes an ER temporary fix can actually lead to a better situation. For example, Anne Rutkowski recalls an ER patient with ALS who came in with a problem with his feeding tube.
The hospital didn’t have the exact type of tube he’d been using, so she used a Foley catheter as a temporary fix. He liked it so much that when she called him to tell him she had the tube he needed, he told her he liked the Foley better and wasn’t interested in trading it in!

Lenora Cash of Jewelry by La Cash's Interview with So Exquisite Charleston!

Spotlight: Lenora Cash of Jewelry by LaCash

BY KINGKIM SEPTEMBER 27, 2013

Lenora Cash reached a low point in her life years ago with two, possible life ending, diseases on separate occasions. A point that many would see is bleak and emotional, became a point of rejuvenation and triumph for Lenora. After leaving her 20 year nursing career behind, due to her condition, she threw herself into her passion for culture and her love for jewelry. Through her passion and determination, Lenora survived both events and created a business through her journey

As a native of Charleston, she was born for the desire to learn about her culture, and through her line Jewelry by LaCash, she is able to share that knowledge and experience with women and men alike. Her handcrafted creations feature bold colors, shapes, and patterns themed around the rich histories and cultures of Africa. Lenora creates her pieces to influence people be the leader, not the follower, while creating your own style and identity.

Her story is truly an inspiration because not only is she an example of chasing your dreams, despite tragedy, but that it is possible to beat the odds and give others hope. With a pure heart and busy hands, the world is at her fingertips! Her extraordinary tale is definitely noteworthy and gives me chills every time! Check it out below!

NOT EVERY DISABLED PERSON USE A WHEELCHAIR NOT ALL DISABILITIES ARE VISIBLE #MYASTHENIAGRAVIS

10 ways to save money on your prescription meds

`By MSN Smart Spending editor Thu 5:07 PM

This post comes from Beth Braverman at partner site The Fiscal Times.

The average American who regularly takes medication spends nearly $760 a year out of pocket on prescription drugs.

That’s a staggering figure, considering some 49% of consumers take at least one prescription drug, according to the Centers for Disease Control.  Costs aren’t expected to get any better when Obamacare rolls out at the start of next year. Consumers who purchase the lower-cost bronze and silver plans on the exchanges may see their out-of-pocket prescription costs increase an average of 34%, according to a recent analysis by HealthPocket. 

But there are some steps you can take to cut your prescription drug costs.




1. Shop around
Calling several pharmacies to compare prices could yield huge savings. Prices at different stores vary more than four-fold, according to a recent study by Consumer Reports. The study found the best prices at warehouse stores like Costco and at local, independent pharmacies. (Experts recommend filling all your prescriptions at one store so that the pharmacist can monitor potential interactions.)

2. Buy in bulk
Most pharmacies will offer a discount for filling a three-month prescription rather than a 30-day supply. You may be able to save even more by buying the 90-day supply via an online drugstore. But before ordering online, make sure the site is legit by looking for a VIPPS (Verified Internet Pharmacy Practice Sites) seal. While it may be tempting to order drugs cheaply from overseas pharmacies, experts say it’s unsafe (and illegal) to do so.

3.  Split your pills (with doctor approval)
Larger-dose pills often cost the same as smaller-dose pills. Ask your doctor whether the drugs you’re on can be safely split. (Typically uncoated, scored pills are good candidates.) Spend $5 on a pill splitter -- and your prescription will suddenly last twice as long.

4. Clip coupons
You may not find coupons in the Sunday paper for prescription meds, but they’re available if you know where to look, says Stephanie Nelson, who runs CouponMom.com. Nelson says you can download coupons worth anywhere from a few bucks up to $100 from some manufacturers’ websites.  Pharmaceutical reps also often leave coupons with doctors or pharmacists to give out on request, so be sure to ask if any are available when you get a new scrip.

5. Use pre-tax dollars
Nearly 90% of large employers’ benefit plans allow workers to set aside pretax dollars for medical expenses in a flexible savings account, but only 23% of employees actually use the accounts, according to Mercer. Big mistake.

Depending on your tax bracket, using pre-tax dollars for your prescriptions and other medical expenses could save you to 20% to 30%. Just be careful to estimate how much you’ll spend in a year, since you forfeit unused cash at the end of the year.

6. Get it for free
Some large supermarket chains like Publix will fill basic antibiotic prescriptions like amoxicillin for free. "Just go up to a pharmacy and ask for a list of which drugs they give out for free," Nelson says.

7. Go generic
Ask your doctor if it’s safe for you to switch to the generic version of any medication you take. Making the switch can save you 20% to 80% on a prescription. Wal-Mart, Target, and some grocery chains offer many generic prescriptions for as little as $4.

8. Stockpile samples
When your doctor writes a new prescription, ask whether she has any samples you can try first. This way you get a few pills for free, plus you can make sure you don’t experience any side effects before you pay to fill the entire subscription. "Many doctors are very willing to provide you with extra samples if you ask for them," says Brandy Bauer, a spokeswoman for the National Council on Aging. Do keep an eye on the expiration dates for your meds, because some drugs lose potency if they’re kept unused for too long.

9. Tap drug-maker assistance programs
Do you qualify for the low-income assistance programs offered by drug manufacturers and nonprofits? It’s worth looking into. The income threshold for these is often much higher than the threshold for public assistance via Medicaid or other state sponsored programs. Plug the name of your prescription and diagnosis into NeedyMeds.org to see if you qualify. "Check back regularly, because we’re always adding new programs," says the site’s administrator, Richard Sagall.

10. Get a discount card
Many organizations such as AAA and AARP offer drug discount cards to members, and others can be downloaded for free online. Such cards are only good for medications not covered by insurance, but a ConsumerWorld study last year found such cards can save users up to 70% on certain meds. Look for a no-cost card that does not require registration.

"Taking a Stand Against Falling,"

 We have scheduled an expert on fall prevention for our September 21st meeting. Aleshia Parrish has accepted our invitation to discuss how we can reduce our risk of falling. At our last meeting, Julian asked how many of us have fallen in the past month. The majority of attendees raised their hands. This will be a very important program for all of us because MG weakness puts us at risk regardless of our age or whether we have experienced falls.

Ms. Parrish is the Low Country Senior Center and Wellness Manager. In an article entitled "Taking a Stand Against Falling," the August 13th issue of the Post and Courier featured her work. She has been training seniors for 20 years and teaches a program entitled "Matter of Balance." In addition, she is pilot testing a new program, "Fall Proof Balance." 

 

 Our support group will meet at 10:30 a.m. this Saturday, 21, September 2013, in the conference room of East Cooper Medical Center, Hospital Drive, Mt. Pleasant, SC.

What research is being done?

Within the Federal government, the National Institute of Neurological Disorders and Stroke (NINDS), one of the National Institutes of Health (NIH), has primary responsibility for conducting and supporting research on brain and nervous system disorders, including myasthenia gravis.
Much has been learned about myasthenia gravis in recent years. Technological advances have led to more timely and accurate diagnosis, and new and enhanced therapies have improved management of the disorder. There is a greater understanding about the structure and function of the neuromuscular junction, the fundamental aspects of the thymus gland and of autoimmunity, and the disorder itself. Despite these advances, however, there is still much to learn. Researchers are seeking to learn what causes the autoimmune response in myasthenia gravis, and to better define the relationship between the thymus gland and myasthenia gravis.
Different drugs are being tested, either alone or in combination with existing drug therapies, to see if they are effective in treating myasthenia gravis. One study is examining the use of methotrexate therapy in individuals who develop symptoms and signs of the disease while on prednisone therapy. The drug suppresses blood cell activity that causes inflammation. Another study is investigating the use of rituximab, a monoclonal antibody against B cells which make antibodies, to see if it decreases certain antibodies that cause the immune system to attack the nervous system. Investigators are also determining if eculizumab is safe and effective in treating individuals with generalized myasthenia gravis who also receive various immunosuppressant drugs.
Another study seeks further understanding of the molecular basis of synaptic transmission in the nervous system. The objective of this study is to expand current knowledge of the function of receptors and to apply this knowledge to the treatment of myasthenia gravis.
Thymectomy is also being studied in myasthenia gravis patients who do not have thymoma to assess long-term benefit the surgical procedure may have over medical therapy alone.
One study involves blood sampling to see if the immune system is making antibodies against components of the nerves and muscle. Researchers also hope to learn if these antibodies contribute to the development or worsening of myasthenia gravis and other illnesses of the nervous system.
Investigators are also examining the safety and efficacy of autologous hematopoietic stem cell transplantation to treat refractory and severe myasthenia gravis. Participants in this study will receive several days of treatment using the immumosuppressant drugs cyclophosphamide and antithymocyte globulin before having some of their peripheral blood cells harvested and frozen. The blood cells will later be thawed and infused intravenously into the respective individuals, whose symptoms will be monitored for five years.

How is myasthenia gravis diagnosed?

Because weakness is a common symptom of many other disorders, the diagnosis of myasthenia gravis is often missed or delayed (sometimes up to two years) in people who experience mild weakness or in those individuals whose weakness is restricted to only a few muscles.
The first steps of diagnosing myasthenia gravis include a review of the individual's medical history, and physical and neurological examinations. The physician looks for impairment of eye movements or muscle weakness without any changes in the individual's ability to feel things. If the doctor suspects myasthenia gravis, several tests are available to confirm the diagnosis.
A special blood test can detect the presence of immune molecules or acetylcholine receptor antibodies. Most patients with myasthenia gravis have abnormally elevated levels of these antibodies. Recently, a second antibody—called the anti-MuSK antibody—has been found in about 30 to 40 percent of individuals with myasthenia gravis who do not have acetylcholine receptor antibodies. This antibody can also be tested for in the blood. However, neither of these antibodies is present in some individuals with myasthenia gravis, most often in those with ocular myasthenia gravis.
The edrophonium test uses intravenous administration of edrophonium chloride to very briefly relieve weakness in people with myasthenia gravis. The drug blocks the degradation (breakdown) of acetylcholine and temporarily increases the levels of acetylcholine at the neuromuscular junction. Other methods to confirm the diagnosis include a version of nerve conduction study which tests for specific muscle "fatigue" by repetitive nerve stimulation. This test records weakening muscle responses when the nerves are repetitively stimulated by small pulses of electricity. Repetitive stimulation of a nerve during a nerve conduction study may demonstrate gradual decreases of the muscle action potential due to impaired nerve-to-muscle transmission.
Single fiber electromyography (EMG) can also detect impaired nerve-to-muscle transmission. EMG measures the electrical potential of muscle cells when single muscle fibers are stimulated by electrical impulses. Muscle fibers in myasthenia gravis, as well as other neuromuscular disorders, do not respond as well to repeated electrical stimulation compared to muscles from normal individuals.
Diagnostic imaging of the chest, using computed tomography (CT) or magnetic resonance imaging (MRI), may be used to identify the presence of a thymoma.
Pulmonary function testing, which measures breathing strength, helps to predict whether respiration may fail and lead to a myasthenic crisis.

Emergency Alert Card

Emergency physicians and nurses are trained to look for Medical Alert jewelry at the time of admission to a health care facility. An Alert Card in your wallet or a Medical ID Bracelet will identify you as an MG patient and immediately assist health care professionals. Do you have yours? Please visit http://myasthenia.org/LivingwithMG/InformationalMaterials.aspx to download your Emergency Alert Card or call the national office to have one mailed to you.

Myasthenia Gravis Foundation of America, Inc.

Dental Treatment Considerations: Helpful Tip- Make short duration, morning appointments to reduce stress, minimize fatigue and take advantage of typically greater muscle strength in the morning.

Myasthenia Gravis Foundation of America, Inc.

Have you signed up for the MGFA Patient Registry as yet? MGFA is please to inform you of the long-awaited launch of the Myasthenia Gravis Patient Registry. The Myasthenia Gravis (MG) Patient Registry is an active database of persons with MG, developed for the purposes of research, treatment advocacy and public awareness. The registry is NOW LIVE and open to INDIVIDUALS WITH MG. To enroll, please click below.
https://mgregistry.soph.uab.edu/MGRegistry/PortalLogin.aspx

SUPPORT WHERE I NEED IT MOST

The Definition of Support- To hold in position so as to keep from falling, sinking, or slipping.  

 

IN JULY 17, 2013 MY SISTER LASHUAN ROBERSON PASSED AWAY.- A member of my MG Support group  made the above Kind gesture on behalf of her passing. The kindness of Janet Myder will never be forgotten. Who would ever thought two of the most devastating this in my life would merge together to produce some thing so beautiful.

Just in case you don't know  about my MG Support Group :Our support group will meets at 10:30 a.m.  Saturday, in the conference room of East Cooper Medical Center, Hospital Drive, Mt. Pleasant, SC.

Myasthenia Gravis Foundation of America, Inc.

Today’s June Awareness Tip is for parents: School Issues: Informal discussions with the school, a Modification Plan under Section 504 of the 1973 Rehabilitation Act or an Individualized Education Plan under Federal Law 108-446 are different ways that a child’s daily school schedule can be changed in response to medical needs. Many things can be done, as needed, to support the education of children with myasthenia gravis. These include: altering PE requirements (modified PE or temporary or long term exclusion), late starts, use of elevators between floors, transportation to school, allowing additional time between classes, providing a second set of books to be kept at home to prevent heavy backpacks that cannot be carried from affecting schoolwork, changing the number of repetitions of math problems, allowing computer access for classroom work or testing, changing nutrition/lunch times, providing OT/PT/Speech therapy as necessary to allow children to benefit from their education. All or none of these modifications may be appropriate for an individual child with myasthenia gravis.

Myasthenia Gravis Foundation of America, Inc.

Today's June Awareness Tip: Bathroom Safety: Limit the time you spend in the shower or bath to avoid weakness. Have someone assist you with bathing if weakness is a problem. Put non-skid strips or a rubber mat in the tub or shower. Install grab bars on the wall or side of the tub or shower. Use a shower chair or bath seat with rubber grips if you are unsteady.

Myasthenia Gravis Foundation of America, Inc.

Today’s June Awareness Tip: Develop a Symptom Action Plan: Notify your doctor if you have a cold or respiratory infection that does not improve or worsens. Notify your doctor if you have chewing, swallowing, speech or breathing problems that do not improve with prescribed medication. Practicing safe swallowing can reduce the risk of aspiration, which can lead to aspiration pneumonia and MG crisis.

Myasthenia Gravis Foundation of America, Inc.

Today's June Awareness Tip: Choose a Sensible Diet: Choose a healthful diet with a variety of foods containing the nutrients that you need. Your age, gender, size and activity level determine the number of calories that you require daily. A nutritious daily diet includes foods from five food groups with 6-11 grain group servings, 3-5 vegetable group servings, 2-4 fruit group servings, 2-3 milk/dairy group servings and 2-3 meat group servings. Limit fats, oils, sweets and salt. Choose sensible portion sizes. Avoid empty calorie foods

Myasthenia Gravis Foundation of America, Inc. 

Popsicles for a Cure "Never Tasted so Cool"
June is Myasthenia Gravis awareness month. Cool down with a popsicle created in just 7 minutes with the ZOKU quick popsicle maker. ZOKU is donating 20% of each popsicle maker sold on their site www.zokuhome.com with the use of the promo code MGFA at checkout.

Myasthenia Gravis Foundation of America, Inc.

Today's June Awareness Tip: Scheduled Rest: Planning for quiet rest periods throughout a busy day or week is very helpful for individuals with myasthenia gravis. For example, try not to overschedule yourself. Listen to your body. Stay rested...stay healthy!

Myasthenia Gravis Foundation of America, Inc.

Today's June Awareness Tip: Meet/Greet EMS teams: Myasthenia gravis is a relatively uncommon disorder. Therefore, in large cities, the emergency medical system may be familiar with this disorder. However, in small communities, particularly ones that depend on volunteer EMS teams, the initial responders may not be familiar with myasthenia and the possible, urgent health issues that can arise. In that setting, some myasthenic patients have felt that their care was delayed while an extended history or interview was attempted while their shortness of breath or weakness made it difficult to respond

Myasthenia Gravis Foundation of America, Inc.

Today's June Awareness Tip:

Kitchen Safety

Slide heavy containers of food along the counter (or use a cart) instead of lifting them when arms are weak. Put food in smaller containers, which are easier to lift and handle. Place items that you use frequently within easy reach so there is no need to climb.

Myasthenia Gravis Foundation of America, Inc.

Today's June Awareness Tip: Bedroom Safety: Place your bed within easy reach of lights and telephone. Remove wheels or casters from your bed and chairs. Use a night light to light the way between your bed and the toilet.

Thymic Neoplasms and Myasthenia Gravis Overview

Thymic neoplasms are tumors that develop in the thymus gland.
People with thymic neoplasms frequently have myasthenia gravis — a chronic, progressive autoimmune disorder that causes the muscles of the head, face, and body to become weak and easily fatigued.

About the thymus gland and thymic neoplasms

The thymus gland sits in the upper chest area just behind the breastbone (sternum). Its purpose is to make white blood cells (lymphocytes) that protect against infection.
Different types of tumors can develop in the thymus. Doctors refer to these as thymic neoplasms.
Types of thymic neoplasms:

• Thymoma — the most common tumor of the thymus involving the cells on the outside surface of the thymus gland. Thymomas grow slowly and rarely spread (metastasize) to other parts of the body. The tumor cells in thymomas have a similar appearance to normal thymus gland cells. Thymomas are easier to treat than thymic carcinomas.
• Thymic carcinoma — a rare type of thymic gland cancer with cells that look radically different from normal thymus gland cells. This type of thymic neoplasm grows more rapidly and frequently spreads to other parts of the body by the time a doctor discovers the cancer. Thymic carcinomas are more difficult to treat than thymomas.

People with thymic neoplasms frequently have an autoimmune disease — such as myasthenia gravis — that causes the body’s immune system to attack healthy tissues and organs.
Learn more about thymic neoplasms at UPMC CancerCenter.

About myasthenia gravis

Myasthenia gravis is a chronic and progressive autoimmune disease in which the cranial, facial, and body muscles become very weak and easily fatigued. It can occur in people of any age, but commonly occurs in women under 40 and men over 60.

Causes of myasthenia gravis

Myasthenia gravis is an autoimmune disorder that causes your body’s immune system to attack healthy organs and tissues in your body, resulting in their destruction.
Normally, your nerves send your muscles messages through a receptor. Nerves use a chemical called acetylcholine to deliver these messages. When the acetylcholine binds to the receptor area of a nerve, the muscle contracts.
With myasthenia gravis, the immune system attacks the muscle's receptor for acetylcholine.
Experts don’t understand exactly why the body begins to produce immune antibodies that attack the acetylcholine receptors. However, it seems to relate in some way to the thymus gland, which assists the body in producing antibodies.
Approximately 15 percent of those with myasthenia gravis also have a thymoma.

Web address:      http://www.sciencedaily.com/releases/2012/10/      121001095041.htm

Researchers Halt Autoimmune Disease Myasthenia Gravis in Mice

Oct. 1, 2012 — Working with mice, Johns Hopkins researchers say they have developed a gene-based therapy to stop the rodent equivalent of the autoimmune disease myasthenia gravis by specifically targeting the destructive immune response the disorder triggers in the body.

The technique, the result of more than 10 years of work, holds promise for a highly specific therapy for the progressively debilitating muscle-weakening human disorder, one that avoids the need for long-term, systemic immunosuppressant drugs that control the disease but may create unwanted side effects.
The research, if replicated in humans, could be a big leap in treating not only myasthenia gravis, but also other autoimmune disorders, the researchers say.
"To treat autoimmune diseases, we normally give drugs that suppress not only the specific antibodies and cells we want to inhibit, but that also broadly interfere with other functions of the immune system," says Daniel B. Drachman, M.D., a professor of neurology and neuroscience at the Johns Hopkins University School of Medicine and leader of the study published this month in the Journal of Neuroimmunology. "Our goal was to suppress only the abnormal response, without damaging the remainder of the immune system, and that's what we did in these mice."
A healthy immune system has the amazing ability to distinguish between the body's own cells, recognized as "self," and foreign proteins and other substances -- including germs and tumors -- to fight infections, cancer and other diseases. The body's immune defenses normally coexist peacefully with cells that carry distinctive "self" marker molecules. But when immune defenders encounter foreign molecules, they quickly launch an attack. Autoimmune disorders occur when the immune system makes a mistake, in which it confuses "self" with something foreign, and then launches an attack by immune cells and/or antibodies to seek out and damage the body's own cells.
Drachman, one of the world's leading authorities on myasthenia gravis and other neurologic autoimmune disorders, and his colleagues say they have found a way to create a "guided missile" approach as opposed to the "carpet bombing" of overall immunosuppression. Essentially, Drachman says, the method eliminates the cells of the immune system that are involved in the attack against self and leaves other cells alone.
The research team created the guided missiles by genetically engineering dendritic cells, which are the immune cells that specialize in presenting antigens to the immune system's T-cells. They extracted dendritic cells from mice with myasthenia gravis, purified them and inserted genes which direct these dendritic cells to target the auto-aggressive immune cells, and destroy them using a "warhead" known as Fas ligand. Then they injected back into the mice the genetically engineered cells, which homed in on the immune system's faulty T-cells. The newly introduced "guided missiles" then sought out and bound themselves to those T-cells, causing apoptosis, or cellular suicide, which halted the autoimmune attack before it could gain traction.
"This way, the autoantibodies were specifically reduced, a key step in treating myasthenia gravis," Drachman says.
The therapy dramatically reduced the autoantibodies responsible for myasthenia gravis, without affecting other responses of the immune system. However, the study was not carried out long enough to determine whether the mice were permanently cured of their disease. Theoretically, a similar approach to treatment could be translated to patients with myasthenia gravis, but so far it has not yet been tested in humans, and it is not yet known whether repeated courses of the therapy might be needed.
Myasthenia gravis, a condition found in an estimated one to seven per 10,000 people worldwide, occurs in individuals who appear to be genetically predisposed, though it is unclear exactly what triggers the disease. Overall, however, an estimated 80 to 100 known autoimmune disorders affect more than 23 million Americans.
Drachman has been at Johns Hopkins since 1969 and is one of the founders of the institution's Department of Neurology.
The study was supported in part by grants from the National Institutes of Health's National Institute of Neurological Disorders and Stroke (NS40778), the Muscular Dystrophy Association and the W.W. Smith Charitable Trust.
Other Johns Hopkins researchers involved in the study include Robert N. Adams, M.S.; Hee-Soon Juon, Ph.D.; Alexei Miagkov, Ph.D.; and Yang Lu, Ph.D. Wenji Sun, Ph.D., now of the University of Maryland, also worked on this study.

"To accomplish great things, we must not only act, but also dream; not only plan, but also believe." -- Anatole France

Myasthenia Gravis Foundation of America, Inc.
June is Myasthenia Gravis Awareness Month and we have distributed posters and letters to Neurologists across the country, so check your neurologist’s office for it today! Also feel free to download the poster and send it to your doctor if they don’t have a copy. Let's raise awareness together! To download a copy of the poster visit www.myasthenia.org

On May 10th  the Myasthenia Gravis Foundation of America's MG Walk in Miami. I hope that you will support  by making a donation in any amount that you can. Please click on this link to access my personal fundraising page. http://www.mgwalk.org/http://www.mgwalk.org/jmyder
Myasthenia Gravis (MG) is a little-known autoimmune neuromuscular disease that causes varying degrees of weakness throughout the body. It strikes regardless of age, race, or gender. (Go to www.myasthenia.org for details about MG.) There are treatments that enable people like me to lead reasonably active lives, but so far there is no cure. The purpose of the walk is to raise awareness about MG and generate funding for research to improve treatments and find a cure.
Thank you!

It is truly an Honor to be one of the people chosen for the. Faces of MG National Campaign Poster www.myasthenia.org.

Anatomy of the Thymus Gland

The thymus, a small organ that lies in the upper chest under the breastbone, is part of the lymph system. It makes white blood cells, called lymphocytes, that protect the body against infections.