Table of Contents
Twins Javier & Miguel's MG Story
National Spokesperson, Suzanne Rogers
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Table of ContentsTwins Javier & Miguel's MG Story National Spokesperson, Suzanne Rogers
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Mrs. Everett Masters of Cotton Center, story starts shortly after the end of WWII. Every muscle in her once-vibrant young body began to lose strength. Periodically the muscles became almost totally useless. Then, within a few hours, she would feel and act normal again. Until her problem began she had been an active and hard working wife and mother, keeping her hands full with church work, as well as caring for her children and working hard on the farm. Her busy schedule never had taxed her strength, but now her body was playing incredible tricks on her. She had trouble lifting even light weight objects. She was constantly drained of strength. When she lay down, she couldn't even lift her head from the pillow. She could hold her eyes open only about half way. She had trouble swallowing her food. Sometimes she even had difficulty breathing. Finally, after visits to several hospitals, her progressively weaker state was tied to the relatively unknown myasthenia gravis. Several of the country's leading physicians, including those at Scott & White Hospital at Temple, Texas, and the John Sealy Hospital at Galveston, gave the same prognosis. She was in the third and final stage of the disease which affected her respiratory system, and she could not live than another six months. Shocked with the news, Mr. & Mrs. Masters returned home to make the most of the next half-year. They found a new doctor at Hi Plains Hospital, Dr. D. R. Foster, who began to constantly pursue new knowledge of the disease. Finally, he sent Mrs. Masters to Dr. Tether at Indianapolis. The Indiana doctor's management of his Texas patient brought great improvement and a lengthened life. On February 16, 1961, myasthenia gravis finally claimed Mrs. Masters, ten years after her doctors gave her six months to live. Click Here to read Melba's Complete Story Under Clinic - Click "Back" on your browser to return to this page.
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J. E. of Muleshoe, Texas, almost died before his case was correctly assessed. He was diagnosed as a victim of half a dozen problems and lived with MG for thirty years before he was correctly treated. He even had eye surgery, to correct a problem which didn't exist.
The disease left McVicker totally dependent on those around him. It started with a man who was strong and muscular, one who had been a star player on his high school football team, and turned him into an invalid.
While playing golf one Saturday, McVicker kept seeing two golf balls. His family doctor sent the patient to an ophthalmologist, who diagnosed the problem as brain tumor. Not satisfied with that diagnosis, McVicker sought a second opinion from another eye specialist. This time the diagnosis was different, and surgery was performed to shorten the eye muscle.
Still without proper diagnosis or treatment, the symptoms worsened. For more than a year McVicker wore an eye patch over the affected eye. His speech grew steadily worse, finally reaching the point that often he could not be understood.
Gradually, he lost his ability to chew his food. For more than a year his wife put everything he ate through a blender. Even then, he often could not swallow it. when the food could not get past his tight throat muscles, he would regurgitate through the nose. Eventually he lost the ability to take anything into his mouth through a straw and was nourished intravenously.
Doctors were baffled. By then they knew the eye surgery had been unnecessary. The early diagnosis of a brain tumor was considered again, then ruled out. Muscle paralysis became a prime suspect, but tests could not confirm it. At last, McVicker's family physician, who had never seen an MG patient and knew nothing about the disease except what he had found in medical books, diagnosed the problem correctly. It was confirmed by Dr. Tether at the Hale Center clinic.
McVicker had been in remission for over twelve year when he died following a lengthy illness just a few days before the MG clinic in the fall of 2000.
Edie Brooks Written by Edie’s Mother, Bunnie Brooks
Our daughter, Edyth Ellen Brooks, whom we called Edie, was born on April 25,1966 and departed this world on March 24, 1976, one month before her 10th birthday.
Until 1971 she appeared to be an active, healthy child with the exception of the normal childhood illnesses. In 1971 we noticed that Edie would go into a trance for just a few seconds once in a while, we were living in Ft. Worth at the time. By the time we moved to Amarillo in 1972 these short trances seemed to happen more frequently, so we became established with a local pediatrician and he recommended that we have her checked by a by a doctor specializing in neuro-muscular diseases.
After running tests, he determined that Edie was having petimal seizures and he recommended that she be put on Peridione. This medication seemed to control her seizures. But, as time went on, we noticed that some times during the night when we would check on her, she would be sleeping with her eyelids half closed. I mentioned this to her pediatrician, but he didn't feel there was any reason for concern.
During the summer of 1974, we were in the kitchen and Edie started having problems with her facial muscles and her eyes. I rushed her to her pediatrician and he immediately admitted her to the hospital and notified her neurologist so that he could run tests. Her neurologist decided that her problem was psychosomatic and we should take her to a child psychologist. This didn't set well with us, so we asked that another doctor run tests for a second opinion. The second neurologist gave Edie a tensilon test and from the results it was determined that she had Myasthenia Gravis. We were told that there was no cure but that there was medicine to help control the disease. She was taken off the Peridione for her seizures and given Mestinon. Later, we learned that the Peridione could have been a factor in bringing on her Myasthenia Gravis. Several doctors felt that Edie probably would have had Myasthenia Gravis later in life but that the Peridione could have brought it on sooner.
Edie was able to get along fairly well on the Mestinon, but in November of 1974, just before Thanksgiving, she was terribly congested from a cold and was put in the hospital. She just couldn't seem to get better, so just before Christmas, her doctor decided that she needed to be seen by a specialist in Houston, Dr. Bernard Patten.
Dr. Patten ran a battery of tests and he agreed that Edie not only had Myasthenia Gravis but she also had a disease that was breaking down her immune system, I can't recall the name, and they were also suspicious of Lupus, but were never able to confirm it. Dr. Patten admitted Edie to Methodist Hospital in Houston so that Dr. Crawford could be the surgeon for her thymectomy. After several weeks, he felt that she was ready for surgery. And thank the dear Lord, she came through the surgery with very few problems.
We returned to Amarillo the first part of February. Through this whole ordeal of nearly two and a half months, we never heard many complaints from Edie. She went through all the confinement, tests and surgery with great courage and determination. We were home only a few days when she asked to return to school and her friends. We were concerned that she may be rushing things, but much to our amazement she was able to catch up on her schoolwork and finish the year with the rest of her classmates. Her medical regime was Mestinon every day, Prednisone every other day, potassium every day and a gamma globulin shot once a month.
Every three or four months, we would take her to Dr. Patten for a check up. In between visits to Dr. Patten, her pediatrician here took care of her with advise from Dr. Patten. Just after Christmas in 1975, Edie was admitted to the hospital for congestion and she was too weak to cough it up. After a few days of being suctioned, antibiotics and respiratory therapy she returned home and a few days after that, felt well enough to return to school.
In March of 1976, Edie came down with the flu and went into a respiratory crisis. Due to being suctioned so much, her throat swelled shut, by the time they got a trac tube down her throat, she had gone into a coma. She was moved to ICU and put on life support and five days later, God saw that she had suffered enough and took her in His care.
Because of our loss, something good was developed. A clinic was established at Baptist/St. Anthony Hospital in her memory with the help of my sorority sisters of Xi Rho Mu Chapter of Beta Sigma Phi, the Northwest Texas Chapter of the Myasthenia Gravis Foundation, Baptist/St. Anthony Hospital and Dr. Bernard Patten and his colleagues, who were so faithful to come from Houston every year to conduct the clinic. It was the purpose of the clinic to help people who were experiencing neuro‑muscular problems get a diagnosis, to help them get the treatment they needed and to help them find support.
After the retirement of Dr. Patten, it was decided that there would not be a need for the clinic in Amarillo. The money left in the Edie Brooks MG fund will be used to help fund the clinic at Hale Center because many of the patients that attend the Hale Center Clinic were also patients of Dr. Patten's at the Amarillo Clinic.
Check out the MG Kid's Club dedicated to the memory of Edie Brooks
Back to Edie's Story in Kid's Club
Click Picture to Enlarge and Read Suzanne's Message to the Northwest Texas Chapter - Click Back to Return to this Page
Suzanne Rogers
Biography
© Columbia Tristar International Television
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It's not very common to find a soap opera star who's played the same character on the same show for more than 20 years, but Emmy Award-winning actress Suzanne Rogers, who has played 'Maggie Horton' on NBC-TV's "Days of our Lives" since 1973, has been around for 27! Growing up in Colonial Heights, Virginia, with her parents Edna and Pete Crumpler and younger sister Lorettea, Suzanne was an avid dancer from the moment she could walk. Whether it was tap, ballet or jazz, her passion was dance. By the time she reached Colonial Heights High School, Rogers' was so polished a performer that she won first prize in the school talent show and her voice was as impressive as her moves, so she was selected as the glee club soloist. |
High school success in the performing arts wasn't enough. Rogers longed to nail a spot with one of the most renowned dance troupes in all of America -- The Rockettes. So, Suzanne's mother took her to New York to audition against hundreds of other ambitious, talented girls for the few spots available. Rogers vividly remembers the agonizing series of auditions where the girls were scrutinized for appearance as well as talent. Her impressive dancing ability successfully took her through the screening process to land a spot with the Rockettes. She recalls, "It was the most wonderful and the hardest thing I have ever done in my life."
One day while still performing with the Rockettes, some co-workers overheard Rogers singing and encouraged her to move onto a career in musical theater. However, the Rockette management frowned upon its dancers doing outside projects. So, Suzanne ran to and from auditions on the QT between performances at Radio City Music Hall. She became an expert at juggling auditions, dance class, acting class, show performances, and commercials. Finally, she was cast in her first play "110° In The Shade" and she bid goodbye to the Rockettes.
Rogers' career as an actress/dancer grew tremendously over the next eight years in New York with Broadway theater credits including roles in "Coco" (starring Katherine Hepburn), "Hallelujah Baby," "Follies," and the national touring company of "Funny Girl."
In between her theater engagements, Rogers returned to her dance roots and performed on the "Ed Sullivan Show" as one of the Peter Genero dancers. Additionally, she appeared in several national television commercials for products such as Pepsi-Cola, Noxema and Lysol.
Finally, a producer told her that if she wanted to have a serious career, she would have to change her last name, tone down her voice and dispose of her Southern twang. The newly christened Suzanne Rogers studied voice and diction and was ready to hit the big time.
In 1973, after Suzanne decided to give California a shot, she landed a role on NBC-TV's "Days of our Lives." She had originally auditioned for a part on "The Young And The Restless," but it turned out they were looking for blondes. The folks at "Days" saw her tape, though, and 'Maggie Horton" was born.
Rogers has starred on the daytime drama ever since, and received an Emmy Award for Best Supporting Actress in 1979. Suzanne find acting on a soap opera to be incredibly challenging. "It is the best repertoire in the world. If you can do a soap, you can do anything," she says.
Rogers proved to herself and all her devoted viewers that she could indeed conquer anything when she was diagnosed with Myasthenia Gravis in 1984. Initially, she was terrified. For one year, during which she took a hiatus from the show, Rogers developed horrible symptoms: she became emaciated, could barely speak and saw with double vision. With medication, therapy and remarkable inner strength, she combated her disease. She reflects, "It's been a growing experience. I am much kinder to myself, my family, the people I love, the people I work with and even the people that are not very nice to me."
Since that time, Rogers works to bestow her positive way of thinking on other Myasthenia Gravis patients. She sends cards and calls the afflicted all over the world to tell them of her battle and give them encouragement.
Suzanne is now in remission and lives a strong, healthy life. She plays golf, walks daily and loves to cook in her Studio City home. In her spare time, she enjoys reading and watching old films on the American Movie Classics Channel. Her three cats, Tiffany, Melanie and Maxwell, keep her company.
© Columbia Tristar International Television.
NEW! "Beau" the Vizsla written by his owner Alex Hart...click on pictures to enlarge...click "back" on browser to return to this page.
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Beau surrounded by bluebonnets...a true Texan! Beau was guest speaker at the Abilene support group meeting.
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Beau with Lajuana Miller (chapter chair & Abilene support group leader) and Alex Hart (Beau's Owner) |
Beau was born in 1997. He is a very energetic Vizsla. Up until October of 2001, he was a happy, healthy dog.
One dreadful day he was in an accident that gave him a fractured rib, and permanent damage to his front left leg. He spent 2 weeks in the hospital in recovery with a fabulous doctor and staff. He made new friends who later would save his life again. The day that he left the hospital he was happy and eager to run around even when his bad leg would not cooperate.
Around March of 2002 Beau started having problems with his left eye. We went back to the doctor, but the doctor insisted that he had no infection, however requested to keep a close eye on it. About a week later Beau was unable to stand up. We went back to the doctor were we discovered that he had a low thyroid. Despite all the problems, Beau was in great spirits and still taking me for a walk.
About 10 days later we were getting ready to go for a walk, but Beau was not very interested in going. Extremely rare in him. I took him anyway. We made it to the corner when he collapsed and could walk no longer. Terrified I took him back home and to his doctor the next morning. As soon as Dr. Sutton saw him he knew it was myasthenia gravis. Had no idea what he was talking about, but soon learned that there was no cure, and not enough information on this disease. He sent me to the only pharmacy in Austin, TX who carried the medication to help him with his MG. Dr Sutton made some phone calls and found a university that would run the test for MG.
A few days later we received confirmation that Beau had MG. We were extremely lucky to have Dr Sutton who was able to diagnose Beau at such an early stage. Not many patients are this lucky, especially a dog suffering with MG. Since then Beau is still in great spirits despite his ups and downs living with MG. He suffers the same symptoms as most patients with MG who take Mestinon. His stomach is the one that suffers the most so he takes 6 pills daily to take care of his it.
We had the opportunity to participate on a study with the help of his doctor. The serums were sent to his doctor and Beau would receive 4 shots every two weeks. Beau was cooperative most of the time.
We continue to learn new things about MG with the help of his doctor, support from Lajuana at the MG foundation up in Abilene, and surfing the web. It is a very rare disease for dogs so it is still hard to find enough information even for his doctor.
I'm still optimistic that Beau will go in remission and hope that it is soon. In the meantime I try to do research and get Beau to participate in any study to help future MG patients. He is a really good sport about it, despite his last visit with his doctor.
If your pet suffers of MG feel free to contact Dr Sutton at www.lakelineanimalcare.com He has been great with Beau, and I wouldn’t have Beau around without his help. The most important thing about our pets is early detection of MG. Once it has been detected it is crucial that they take their medication.
New! Donna found us on the web and submitted
her MG story to share with you.
My name is Donna Jordan. I am 20 yrs. old and I have been diagnosed with MG since I was 17. I don't really know where to start. I can remember growing up and always feeling tired and barely having enough strength in my arms to pull my hair back. I thought this was due to hitting puberty and was just apart of growing up so I never complained of it.
In the fall of 2000 I was a junior in high school and things were great for me. I had a great outlook on life and had the same thought like every other teenage did (I was invincible, that nothing bad could happen to me). Well reality soon sat in when I awoke one morning with a droopy eyelid. I didn't think much of it at first, until I visited the family eye doctor and he sent me to a neurologist. I was referred to one doctor after another and had a countless number of blood tests and CT scans done before I was finally diagnosed with MG.
I was prescribed mestinon to help my eye and give me strength and boy was there a difference. I could pull my hair back without having to sit down and my eye opened back up. The downfall was having to take the medicine 3 times a day for the rest of my life. Not something a teenager really wants to hear. This was not my only option. I could have had a Thymectomy. But that seemed way to scary or I could have been put on steroids. So I opted to stay on mestinon for as long as possible.
This was 3 years ago and I have had ups and downs since then but I am still coping with it. Just recently I have had to revisit my neurologist due to the weakness getting worse. She upped my medicine to 1.5 pills 3 times a day. If the weakness doesn't seem to subside the next step would be a Thymectomy.
I have kept my hopes up throughout this whole ordeal and will continue to. I have realized this was the hand I was dealt and if God didn't think I could handle it, he would not have brought it on me.
Note: Thank you Donna for sharing...it is encouraging that your faith has helped you deal with MG...God has a plan and a purpose for all that happens in our lives, we just have to look for whatever it is. Because of MG, I had to give up my job as childrens director at my church. However, God gave me a "new ministry" of helping others with MG. Since I have experienced MG personally, I know and understand exactly what they are experiencing and am always available to listen and help whenever possible. Just by sharing your story, you are helping others, too.
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Javier and Miguel's Story is featured in our MG Kid's Club pages!
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My Fortunate Disease by V’Lesha Wilcox
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I bet you have never thought about being able to smile. You're probably thinking, "C'mon, everyone can smile, you don't have to think about it." I would've said the same thing before my sophomore year in high school. In 2001 I was diagnosed with a neuromuscular autoimmune disease called Myasthenia Gravis. MG affects the transmission of nerve impulses at the neuromuscular junction, causing the characteristic fluctuating weakness in voluntary muscle groups that include ocular, oropharyngeal, shoulder, hip, and limbs. Although there are effective treatments, there is no cure for this disease. I take a total of 7 pills daily, and a couple more when needed. I also went through major surgery. I had a thymectomy, which uses the same procedures as open-heart surgery to remove thymus tissue in the chest cavity. I had to undergo a six-week long recovering period.
You're probably wondering how all of this started. My sophomore year started out great. School was going well, and my athletic endeavors were going even better. I qualified for regionals in cross-country my freshman year, so the outlook was even brighter for the next year. I was sick on the day of the meet though. Basketball was going great. I was a starter and the only sophomore on varsity. As games began we were winning, but I was having some problems. My eyes wouldn't stay open, and when they did, I had no depth perception at all. This of course threw off my game tremendously. I went to an ophthalmologist, and he said my eyes were healthy and had no idea what the problem was. This was good news, but also not so good at all. I kept playing though.
I then began to experience problems with my facial muscles. It became very difficult and tiring to smile, chew, and talk. The muscles in my face just wouldn't work. I couldn't explain it to anyone. As time went on, I had trouble writing in school and doing other simple tasks like putting on my makeup and fixing my hair. In games, my legs would feel very tired even before tip-off. I spent 45 minutes before the game stretching and rubbing them down with Icy Hot trying to loosen them up. I couldn't figure out why it was that way. We played in a Christmas tournament over the break, and during the first game, it was horrible. I couldn't get up and down the court or move my feet well on defense; I was one of the quickest people on the team. I told coach that my legs just wouldn't work, but naturally that is a little hard to understand, especially because we were out of shape due to the break. During the next game, I could not run. When I tried I would just fall. My legs would not move. This scared me.
My parents took me to the doctor and that is when a long, grueling process began. By doctor's orders I couldn't play basketball anymore. She went down a long list of things it could be, and the testing began. I visited the doctor almost twice a week to run more tests. After three months of being pricked, shocked, and drained the doctor referred me to a neurologist. He then began his tests. I missed almost 25 days of school that year, not to mention the rest of basketball and track. Finally, after six months of tests, I was diagnosed with Myasthenia Gravis, and told I would probably never be able to play or run again. This was not an option.
I started treatment which included a high dose of a steroid called Prednisone. This helped with the symptoms, but the side effects were awful. I had an increased appetite, my face swelled up, and I was extremely moody. But I was beginning to be able to do things that I couldn't do before. My eyes and facial muscles improved a lot, but my legs still weren't up to speed. Not playing was completely out of the question though.
That's when I decided to have the thymectomy. There was only a fifty percent chance it would work, but fifty was better than zero. The procedure took place in June 2002. Because of the surgery, I no longer have to take the steroids. I'm not cured but I'm not on steroids. On top of that, I played basketball my junior year, started, and we were area champs. I received 1st team all-district honors. I also ran track my junior year and qualified for regionals in the 800m relay and the 1600m relay. Now it’s my senior year. Although I am unable to run cross-country, I am playing basketball. We have a good team that is state ranked. I have endured a lot to get here, and I have a scar to prove it!
Throughout the whole experience I wished I wasn't this way, but I'm appreciative of the lessons I've learned. Without this experience I wouldn't be grateful for the things people take for granted. I wouldn't have thought twice about being able to fix my hair or hold silverware or swallow food. Now I thank God for every opportunity I have to do these things. My spiritual life has also benefited from this. I consider myself lucky because although I will be taking medicine for the rest of my life, I have everyday reminders to be thankful and not take anything for granted.
This misfortune has pushed me to become an orthopedic surgeon, in order to help others that encounter a career ending mishap. Some people might call my condition sad or unfortunate, but I think I am very fortunate to be the way I am physically, mentally, and emotionally.
Note: V'Lesha was recruited by the University of California at San Diego to play basketball, she played one year, was red-shirted for a knee injury, became a little homesick for Texas family and friends, and wanted to move forward with her goal to become an orthopedic surgeon and is now back in Texas attending college here.
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VITA by Helen in Germany
Our second boxer, Vita, became ill with MG in the 80s when the disease was practically unknown among dogs. The first symptoms appeared one day when we were out for a walk and she suddenly collapsed and couldn't get up again for several minutes. She did eventually manage to get on her feet again, walked a few steps and fell down again. She was only a puppy but already quite big and heavy and I had to carry her home. We went in despair from one vet to another and none of them had a clue what was wrong with her. We eventually heard of a wonderful vet in Düsseldorf called Dr Hämmerling and he was more or less our last hope before having our poor Vita put to sleep. He showed us a text in English in an American veterinary book which described Vita's symptoms exactly. (apparently he had trained in the USA) He said that he'd never actually seen a case of MG himself as it was extremely rare in dogs, and although he did know of a treatment, it was very difficult to apply as nobody was quite sure about the dosage and too much could poison the dog. He gave us tablets saying that if she showed signs of poisoning I would have to give her an injection of the antidote. The treatment was horrendous. Until I eventually found the correct dosage it was a case of trial and error but in the end it worked and Vita had a happy boxer life and lived to be 10. As I said, this was way back in the 80s and I now realize that we were extremely fortunate to have found Dr Hämmerling as even today I'm sure that most vets wouldn't be capable of diagnosing far less treating the condition. From what you said it sounds as though there's now an easier and more effective treatment and I'm so happy about that as I would hate to think of other pet owners having to go through the trauma of trial and error we did to save our beloved Vita.
We all enjoy reading others MG story. If you would like for us to post your MG Story on our website, you may e-mail your story to webmaster@nwtcmg.org !
