Fall 2005
NEWS TOPICS
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A Message of Hope in the Desert: 2006 Annual Meeting of the Myasthenia Gravis Foundation of America, Inc. The 2006 MGFA Annual Meeting will be held at the Wyndham Buttes Resort in Tempe, Arizona from May 4-6, 2006. Hotel information is available on the Annual Meeting Web site, www.myasthenia.org/AnnualMtg2006. For reservations at the Wyndham Buttes Resort (www.wyndham.com) call 1-800-996-3426 and identify yourself as a member of the MGFA. Save the date: May 4 – 6, 2006 More information will be posted on the MGFA site as it becomes available.
The first report connecting the thymus to myasthenia gravis was in 1901 when German neurologist Hermann Oppenheim found a thymic tumor in the autopsy of a myasthenic patient. This report prompted German surgeon, Ernst Sauerbruch, to perform the first thymectomy for a myasthenic with an enlarged thymus. In 1939, Alfred Blaylock reported a positive clinical response for a series of myasthenics with thymic tumors undergoing a thymectomy. Later he reported positive results from thymectomies on patients who did not have thymic tumors. Thus began the treatment of myasthenia gravis with a thymectomy. In recent years doctors have started questioning the necessity of a thymectomy in all myasthenia gravis patients. Some research shows that 50% of patients (without a thymoma) undergoing a thymectomy improve. Other research does not support these findings. Since myasthenia gravis symptoms fluctuate, would they have improved without surgery? Is a thymectomy beneficial to patients who test seronegative to the AChR antibody? Too many questions have never been adequately answered. What is known is 10 – 15% of myasthenics have a thymoma, and an additional 60% - 70% of myasthenics have hyperplasia. There is no question to the necessity of a thymectomy when a thymoma (a growth in or on the thymus) is present. Thymic hyperplasia is an enlarged thymus, which may or may not turn onto a thymoma. Hyperplasia and atrophy are indistinguishable on imaging studies such as a CT scan. This is one of the reasons thymectomies are routinely suggested. Nearly one hundred years after the first thymic tumor was reported, physicians and scientists from around the world joined together to study the efficiency of thymectomy in myasthenics who do not have a thymoma. The Executive Committee of the Thymectomy Clinical Trial, Drs John Newsom-Davis, Gil Wolfe, Henry Kaminski, Gary Cutter and Fred Jaretzki, are to be applauded for all their hard work. They have gathered 62 centers around the world who have committed to participate in the study. One of their main goals was to get backing from the National Institute of Health. In May 2005 they announced that they have qualified for funding from the National Institute of Health and the thymectomy clinical trials could begin as soon as the Spring of 2006. MGnet sincerely thanks everyone committed to this project.
© 2005 by Dale Wurtenberger
The Spring of 2005
may be the beginning of thymectomy trials, but there are other
trials and research that relate directly to myasthenia gravis.
Right now there is more research for myasthenia gravis then ever
before. Although many myasthenics are already taking CellCept
understanding and proving the effects is a positive step
forward. Monarsen may change the lifestyles of patients who
spend each and every day timing their medication. PTR-262 may be
able to suppress the production of MG antibodies. Saliva from a
tick shows great promise in the drug rEV576. And, there are
other research projects on the horizon, but the following are
either in the midst of clinical trials or have announced a date
when they are expected to begin. Trial of Mycophenolate Mofetil in Myasthenia Gravis (CellCept) There are three
trials listed (phase II and phase III) on the ClinicalTrials.gov
website. Monarsen Ester Neurosciences has completed a Phase-Ib Clinical Trial to examine the safety and efficacy of oral administration of Monarsen (previously known as EN101) to myasthenia gravis (MG) patients, in the UK (Hope Hospital , Salford) and in Israel (Hadassah Hospital , Jerusalem). Monarsen is expected to help control myasthenic symptoms (similar to pyrodistigmine bromide) without any side effects and a once a day dose. Ester Neurosciences began a phase-IIa study at Hadassah Hospital , Jerusalem in Mid August 2004. For more information see the Ester Neurosciences (http://www.esterneuro.com/Index.htm?/RD_regulatory.html) website. rEV576 Evolutec has developed a new class of drug and had unprecedented preclinical results for one of its pipeline proteins rEV576, which inhibits the myasthenia gravis disease. One injection of rEV576 began working within 35 to 40 hours and was still working at 180 hours (5 days.) Trials expected to
begin in late 2006 or early 2007. For more information see the
Evolutec (http://www.evolutec.co.uk/index.htm)
website. Of particular interest is the ‘Evolutec Webcast’ link. PTR-262 “Debiopharm and DeveloGen Announce Partnering of Myasthenia Gravis Program. ‘PTR-262, discovered at the laboratories of Professors Michael Sela and Edna Mozes at the Weizmann Institute of Science, Rehovot Israel, is a synthetic peptide which down regulates immune responses associated with myasthenogenic peptides.’ Rolland-Yves Mauvernay, President and CEO of Debiopharm said, ‘PTR-262 is a novel approach that may replace the currently used immunosuppressive drugs and avoid the side-effects that myasthenia gravis sufferers may experience. PTR-262 will be the first disease-modifying drug for the treatment of myasthenia gravis, as it aims at specifically abrogating the production of disease-causing antibodies. This represents a significant improvement over current therapies and a promising treatment for myasthenia gravis patients’.” For more information see the Develogen press release (http://www.develogen.com/pressreleases/20050816.php) dated August 2005.
© 2005 by Dale Wurtenberger
Mestinon® is an orally active cholinesterase inhibitor used as the first source of therapy in treating myasthenia gravis. Acetycholine is a chemical, one of the main neurotransmitters in the brain that sends nerve impulses to the skeletal (voluntary) muscles. In myasthenia gravis, there is a breakdown of acetylcholine in the neuromuscular receptor sites, sites responsible for voluntary muscle control. Mestinon® prevents this breakdown of acetylcholine by allowing more acetylcholine to accumulate at the neuromuscular receptor sites, providing more control of voluntary muscle function, such as eye movements, limited strength, swallowing, chewing and breathing. The physician determines the amount of Mestinon® dose and frequency according to the needs of each individual patient. During the initial induction of Mestinon®, the patient should keep a record reflecting the responses of symptoms after each dose. This helps the physician determine the correct dose and frequency for the patient, especially when the patient’s myasthenia gravis weakness is unstable. It is very important to follow the physician’s instructions pertaining to the patient’s Mestinon® dose and frequency. Discuss any change made in your Mestinon® regimen with your physician because too much Mestinon® can induce extreme muscle weakness. Equally important, discuss any instability of myasthenia gravis weakness with the physician BEFORE changing the initially prescribed dose and/or frequency. PRECAUTIONS AND SIDE EFFECTS Precaution should be taking in patients with mechanical intestinal and urinary obstruction. Particular precaution should be taken when administering Mestinon® to patients with bronchial asthma. The most common side effects of Mestinon® include nausea, vomiting, diarrhea, abdominal cramps, increased tearing, salivation and bronchial secretions. Other side effects are muscle twitching, muscle cramps and weakness. Since Mestinon® is eliminated from the body mainly unchanged by the kidneys, lower doses of Mestinon® may be required in patients with renal (kidney) disease. The safety of Mestinon® has not been established during pregnancy and lactation, or in pediatric patients. When taking Mestinon®, failure of improvement of symptoms may be a sign of overdose or underdose. Note: During the
Gulf War, pyridostigmine bromide tablets were administered to
the military as a form of prophylaxis against the lethal effects
of soman nerve agent poisoning. There are three forms of Mestinon®:
PROPER STORAGE OF MESTINON® Mestinon® tablets and Mestinon Timespan® tablets are hygroscopic, meaning they pick up and retain moisture. Mestinon® tablets that are exposed to moisture may appear mottled or discolored, and easily crumble. Though moisture affects the appearance of Mestinon®, it does not alter the drug’s efficiency. Do not store Mestinon® tablets or Mestinon Timespan® tablets in bathrooms or kitchens where humidity may be a factor. Mestinon® tablets are packaged in a bottle of 100 or 500 tablets. Mestinon Timespan® tablets are packaged in a bottle of 30 tablets. Do not remove the
desiccant (a drying agent) canister from any prescription bottle
of Mestinon®. THIS JUST IN! As of July 20, 2005, the U.S. Food and Drug Administration approved the manufacture of pyridostigmine bromide 30mg tablets by Barr Laboratories, Inc. Barr Laboratories, Inc., a subsidiary of Barr Pharmaceuticals, is based in New Jersey. Their primary emphasis is on generic contraceptives as well as products for oncology, immunology, cardiology and physiotherapeutics. Some of the brand names for which Barr Laboratories, Inc. has been approved by the U.S. Food and Drug Administration are Klonopin, Coumadin, Allegra and Nolvadex. All technical information
obtained from Valeant Phamaceuticals International 2005 © 2005 by S.L. Smith
In July 2005, the U.S. Food and Drug Administration approved the manufacture of pyridostigmine bromide in 30mg tablets by Barr Laboratories, Inc. Barr Laboratories, Inc., a subsidiary of Barr Pharmaceuticals, is based in New Jersey. In 2003 Pyrodistigmine Bromide (Mestinon®) was approved by the FDA for use by U.S. military combat personnel to improve the chance of survival after being exposed to Soman “nerve gas” poison. The Federal Drug Administration cautions, “Pyridostigmine bromide is effective only when taken prior to exposure to nerve gas and must not be taken during or after Soman exposure.”
• I am in immediate danger, what do I do?
• What is abuse?
• What is unique about protections for the
disabled?
• How do I get an Emergency Restraining
Order?
• Are there special rights for the abused
disabled party in a divorce?
• Why are persons with disabilities
sometimes reluctant to get help?
• What is the difference between Temporary
and Permanent orders?
• Is there somewhere I can go to be safe?
• Do I need an attorney?
• Help!
© 2005 by L. Schaedle
You are in a situation where you can’t speak. Need medical help, how will the paramedics or other emergency personnel let your family/loved ones know?? Did you know that the emergency personnel have to rummage thru your personal effects and scroll thru your cell phones contacts to find a person to call?? It takes a great deal of time to do this. So what can you do to help hasten this process?? You can put ICE on your cell phone. This idea is the brainchild of a paramedic in Cambridge, England by the name of Robert Brotchie. They have been using his system for over a year in Britain and only came to the world’s attention after the London bombings. After having taken care of many patients who were unable to communicate the emergency contact information to him, he came up with a very simple plan. Since a good percentage of people carry cell phones, he suggested that the cell phone users enter the word ICE (acronym for In Case of Emergency) before the name/names of your emergency contacts in your cell’s phone book. IE: ICE--Susie ICE--Bob etc… Now the emergency personnel can access the phone book on your cell phone and immediately see whom it is they need to contact. You can have one or more persons designated as ICE contacts. You must be certain that these numbers remain up to date. It would be counterproductive to have ICE--Jane and emergency personnel dial to find the number disconnected. Another scenario, they dial ICE--Bob and find that he is an ex-boyfriend and wants nothing to do with the injured person. So you can see how important it is to keep this contact information accurate and up to date. Please note this has not been adopted by all states/areas. So take a moment to contact your local EMS and police departments to see if they have or not. If not, provide them with a copy of this information so that they can give consideration to instituting it in your area.
© 2005 by D.J. Butler By Kathlen Knorr Several months ago, Through the Looking Glass Organization (TLG) publicly announced an essay contest for college scholarship money for children of a disabled parent. The winners were announced and their essays were posted on the Looking Glass website www.lookingglass.org . MGnet thought it would be interesting to see if any of the winners or runners up had a parent with Myasthenia Gravis. One of the eight winners did have a parent with myasthenia, and one semi-finalist. To give a little back ground, Through the Looking Glass (TLG) was founded in 1982. The organization helps with clinical and supportive service, training and research for families with one or more family members with disabilities or medical issues. Locally TLG provide counseling, home visits, developmental services, parenting support. TLG is also the National Resource Center for Parents with Disabilities, providing consultations, publications, training, and networking regarding parenting with a disability. Also training and consultations for parents, including but not limited to adaptive baby care equipment, custody issues, pregnancy, birthing and adoption issues. MGnet contacted Paul Preston, Ph.D., Director, National Resource Center for Parents with Disabilities, who was extremely helpful with answering questions. We received permission to print the essays involving Myasthenia Gravis. MGnet wants to congratulate these winners and thank them for sharing their essays with us. Through the Looking Glass also plans on having another contest for 2006. MGnet will release the information as soon as possible or go to TLG’s website. Essays from TLG's 2005 College Scholarships for Students of Parents with Disabilities
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ Growing up with a parent that is permanently disabled has been a very hard concept for me to accept. My mother has been on permanent disability since I was twelve years old. She was working for the Department of Corrections when her problems started to interfere with her life. She was forced to work out of the home and finally had to quit her job because the doctors would not allow her to work anymore. She sold Catholic items out of our home for a couple of years after that, going to churches on available weekends when the family was around to help her out. She was also forced to quit doing that a few years ago because us kids were getting older and couldn't help her as much. Her doctor told her that she couldn't continue putting that much strain on her already deteriorating muscles. Ever since I can remember, my mom always had to walk with a cane or a crutch of some kind. I could never understand the pain she was going through and why she walked with those weird looking sticks. I was very self-centered when my mom was first diagnosed with her disabilities, never thinking about how she felt, rather just about how embarrassed I was to be seen with somebody that would walk like that. I didn't want my mom to come places with me because I would feel embarrassed. She knew how I felt and did her best to not be seen around me if she knew it was bothering me. I would sometimes cry because I couldn't have the same mom as everyone else; a mom that could go places with their kids and do the same activities that their kids did. Instead, my mom was forced to sit out of things because of her disabilities. It did have an advantage though. We received a pass at water parks and amusement parks to go to the front of the lines and not have to wait. That was always fun, but I wish my mom didn't have to pay the price for it. She is always in pain, and takes over five pills a day for the different disabilities to lessen the effects. She will never again be able to run or play ball like the rest of us. I now see how much it has affected her life and mine. She was always there for me after school and when I would need someone to bring me medicine at school since I was twelve on. She was anywhere I needed her to be in a heartbeat. When I got in my car accident a few days before my fifteenth birthday, I needed somebody there with me right away because I was really scared. I didn't know what to do and didn't know how my dad would react since it was his car. I called her and within five minutes, she was at the scene calming me down, taking care of the police officers, and figuring out what to do with my car. She also told my dad what happened so I wouldn't have to. When I was fifteen years old, I was sexually assaulted by a family member on my dad's side. I had to go to a deposition in Bismarck, North Dakota. My mom was the one who was with me the entire time, never letting the attorneys get to me and always reassuring her that even though my dad's side of the family was casting us out, that my parents were always there for me and believed me one hundred percent. She has been very supportive of me in all my choices, such as not wanting to invite anybody on my dad's side, including my grandparents, to my graduation, and my brother not wanting to invite any of them to his wedding later this summer. She stood up to my dad and wasn't afraid. If she had to, she would have put her marriage on the line to stick up for her kids. Her having a disability allowed her to be with me all the time, especially when I had to make the court appearances and during the days when I would have depression lows and anxiety attacks. She never gave up on me and knew that someday I would come around and learn to forgive people the way that she has shown me. She has always been at all of my brother's and my activities since she didn't have a job that would stand in her way. It was nice to have the support and know that somebody cared about you that much. I see her trying really hard to make the most of herself everyday and it's hard because she can't do the same things that you and I can. She can only push herself so hard without having to quit because her body won't allow her to continue. She has taught me a lot of valuable lessons in life such as never giving up and putting others before myself. Her kids always came before herself, whether it was clothes or taking care of somebody that's sick. This disability has been hard on the entire family, but I am glad that my mom had been strong and there for me. If anything, it has taught everyone a valuable lesson and allowed my mom to be much closer to her family. I wouldn't change it for anything -- except if it would make my mom feel better.
Bethanna Feist Runner-up winner Laura Spearot, East Hartford, CT She 'll be okay, don 't worry. As I made my way down the long barren hallway, I looked down at my new white tennis shoes and willed them not to make squeaking sounds. When I entered the patient's wing my eyes slowly adjusted to the new dim lighting and the circular setup of the hospital floor. My father solemnly gestured to me to follow, and I trailed behind him while trying not to peek into other patient's rooms. Upon finding the correct door we quietly crept in. There she was, my mother, peacefully asleep and without any signs of pain. While I looked on, the silence in the room began to grow. In that moment my life seemed to pause, as if I were lying in the hospital bed with my mother, both of us devoid of energy or strength. There was nothing to say, nothing to hear; silence and death combined into one. It was at that point I heard the thoughts buzzing in my head: ‘What if she dies? What will I do? How can I live? How can I make this better?’ Suddenly, wet tears streamed down my nine-year-old face, burning my chapped lips. Being this close to silence, this close to death, scared me more than I could have ever imagined. My mother's diagnosis with an incurable neuromuscular disease would be a life-altering event, but the true challenge lay in learning to live with the disease. Myasthenia Gravis (MG) became a part of my family as much as my father, mother and brother. As we embarked on the journey of living with MG, we would encounter unfamiliar medical landscapes and experience many disappointments. This would include my mother's disability retirement and my parent's divorce. I have many childhood memories of my mother being hospitalized for treatments, trips to the emergency room and of her being incapacitated at home. Very early on I became my mother's "little helper". However, on this journey with her I also learned a special kind of adaptability that comes with the uncertainty of day-to-day life with a parent with myasthenia gravis. Even before my mother became sick, I learned from her that success in life is not based on what we are given, but how we use what we are given. A wooden plaque that has hung over our family desk since I was a small child reads, "...the battle sir, is not to the strong alone; it is to the vigilant, the active, the brave." (Paul Revere.) Ironically, this sentiment now seems to summarize my mother's life with MG. To me, its lesson in the value of motivation and persistence has always been clear. It is these values that I have applied to my educational program and my life with a parent with a disability. I have pursued these values by being vigilant in seeking intellectual challenges, active in my local MG community and brave in the face of adversity as the child of a disabled parent. I have learned to live life with disappointment, cherish life's small victories and always look to the future. This quote is also relevant to my chosen field of study, neuroscience. The medical field must be brave, active and vigilant in pushing the limits of known science to improve quality of life for those with neurological disorders through disease prevention, improved diagnosis and treatment. My education will prepare me to be an active participant in this change.
Laura Spearot Please note that all materials including these essays are copyrighted by Through the Looking Glass. If you need additional information on re-printing or using any of these materials, please contact us.
In high school, Brandon rewrote passing records for his Hewitt-Tussville Class A Team. During this time he had his MG under control. So his future in playing college football looked like a reality. Brandon went off to college, to study for a business degree and his dream of playing for a SEC football team. Then disaster struck for him and his dream. While returning to college after a break, Brandon was involved in a car accident. Car accident injuries are bad enough; add myasthenia symptoms and it spells disaster. The stress of the accident and injuries caused an exacerbation of his symptoms. Brandon found himself standing on the sidelines. The weakness and double vision was too much for him. At one point, he felt he was through with football. His coach, friends and family did not believe that. They felt if there were a chance for playing football, he would find it. He decided to leave school and go home to recuperate. Brandon recuperated from his injuries and worked with his father. His coach, friends, and teammates kept pushing him to return. After a long break, he decided to start to workout again with a personal trainer to try to see if he could get back into shape. It was not easy and Brandon had to be careful of not overdoing and making sure he rested. After a long respite, Brandon returned as a sophomore at the beginning of 2005 school year. Now not only did Brandon have to worry about his Myasthenia, he had even more pressure put on him. Last years quarterback graduated and that left a spot open. The coach chose Brandon to take that place. Being the starting quarterback is an awesome responsibility by itself. Then add the fact that the Auburn Tigers ended there season last year with a fifteen game winning streak. Talk about stress, which in itself makes MG worse. But Brandon felt he was up to the challenge. He wanted to prove that he had it in him to succeed and capture his goal. In spite of the negative comments and press questioning whether or not the young player was capable of handling such a tough job. Well as of this writing Brandon not only met his goal, he has exceeded the goal. The Auburn Tigers record is 6-2. Brandon has 203 attempts with 119 completions, 1589 total passing yards, 11 touchdowns, with the longest touchdown pass being 39-yards. His total offensive average yards per game are 215.7. October 29, the Tigers won 27-3 over Mississippi. Brandon threw 205 yards and 1 touchdown.
Congratulations Brandon on not only reaching your goals, but also for giving the rest of the people diagnosed with myasthenia gravis hope to accomplish their dreams. © 2005 by Kathleen Knorr MG Around the World is feature of the MGnet Connect Newsletter. We will feature a person with MG each issue, traveling all over the globe via e-mail to interview him or her. If you know someone who would make a good subject, please contact Kathleen Knorr, newsletter@mgfa-mgnet.org .
Katarina lives with her parents in the small town of Kosice. She has two brothers who live in Prague, the Czech Republic capital. She earned a degree in economics and is looking for a job in that field. Katarina was diagnosed with MG in 1988, at the age of 17. After spending the summer in Canada, she returned home to Kosice. She began feeling very weak and tired, but attributed her feelings to changing time zones. However, things continued to go downhill. The next set of problems began with difficulty talking and swallowing, and droopy eyelids. After a checkup with her GP, she was sent to a neurologist who recommended she go home and rest, returning if the symptoms didn’t improve. Still believing she was just tired from her vacation, she went home to rest. Katarina’s grandmother
happened to be friends with the neurologist. While visiting During her week-and-a-half stay, it was found that Katarina had an enlarged thymus and she was placed on prednisone. She then was transferred to the town of Bratislava, where she had a thymectomy and extensive blood work. During this admission she also was started on Mestinon four times a day. Since that time she has been doing well with symptom control. She takes her medicine and schedules frequent rest periods. Katarina also enjoys mild exercise to stay fit and feels it helps with controlling the MG symptoms. After appearing on a local radio show to discuss myasthenia gravis, Katarina was contacted by several people who have MG and wanted to know more about it. Since they were not able to read English, they were not able to fully access the wealth of information available. Katarina did her best to share what she knew about MG. She is multilingual and receives MG newsletters, also scouring the Internet to stay informed. She is unable to participate in online MG chats because of time differences. That problem gave rise to an idea to begin a website of her own about MG. Her goal is to provide support and information to other MGers in their native languages. Plans had to be put on hold while she finished her degree studies. Now that she is done, the website is coming to life. She has enlisted help from a friend, who is a doctor, to ensure the accuracy of all the information she is posting there. Her vision has come to fruition with the opening of a website in the Slovak language. The web address is http://www.myasthenia.sk/ . This is sure to be a great help to those in her country who want to learn, share and get/receive support. Excellent work, Katarina. We applaud you! Katarina’s advice for dealing with MG? Think positively. Don’t dwell on the diagnosis of MG and what you are no longer able to do. Focus on what you CAN do! © 2005 by D.J. Butler If you are interested in helping with the MGnet Newsletter, please contact the editor, Kathleen Knorr at: newsletter@mgfa-mgnet.org Any Chapter of the MGFA may copy and reprint one of these articles if they comply with the following rules: All articles must be reprinted in their entirety including any references or links; The author's name must be included; MGnet and the MGnet web site must be included ( www.mgfa-mgnet.org ) MGnet must be notified of when and where the article will appear ( newsletter@mgfa-mgnet.org ); no article may be permanently placed on another web site, but permission may be granted to link to the article. Anyone outside the MGFA must submit a request in writing to copy any article. ( newsletter@mgfa-mgnet.org ) The decision to allow an article to be reprinted is the sole right of MGnet. Under no circumstances may the article be placed on another web site. Permission to link to this site will be determined by MGnet upon receiving a request. ©2005 by MGnet |
Those
two words do not go together, or do they? Brandon Cox
believes they go together very well. Brandon has dreamed
of playing college football since he was five years old.
Nothing else would do, he intended to play football.
Then at the age of 15, he was diagnosed with Myasthenia
Gravis. Double vision was the main complaint. Family and
friends worried that his chances of playing football
were gone. Not only because of the MG, but side effects
from his medication could cause brittle bones. He has
had tests for bone density every year. One strong hit in
football could cause some major damage with brittle
bones. None of this gave him pause from his dream. He
had different ideas. He was not going to give up. He had
the habit of excelling in everything he did. So this
little problem of myasthenia was not going to stop him
from achieving his goal. He has combated the chance of
brittle bones by taking calcium supplements. He faced
every problem with determination of succeeding.
Katarina Cermakova is a
24-year-old resident of the European country of Slovakia, an
independent state created along with the Czech Republic when
Czechoslovakia split in 1993. 
with
the doctor a few days after Katarina’s appointment, her
grandmother mentioned that one of Katarina’s aunts had MG. That
prompted the neurologist to call her back to be admitted to the
hospital.