Patient Histories
Pam Thomas
Sheila Jones
Damon J. Wainscoat
My Story by Pam Thomas
I feel that all of us who deal with Myasthenia Gravis have our own unique and definitely very individual story to tell about how it was discovered, what we have dealt with and continue to deal with. Of course, some cases are very mild. A lot of people who are reading this are already aware that cases of Myasthenia Gravis can range from very mild to very severe. In addition, there are some who must also deal with severe flare-ups/attacks that result in occasional hospitalization.
The history of my case began in July 1998 when I was diagnosed with breast cancer. My case required the full treatment ranging from surgery to chemotherapy to radiation therapy. My tumor was caught "early", and I was lucky to be in the hands of an aggressive doctor who did not believe the results of the 1 st biopsy when it came back negative. This resulted in a 2 nd (more involved) biopsy being ordered and giving a positive report. I shall always be grateful that he was not a doctor who easily dismissed the matter and determining that it could be rechecked in six months.
I'm sure many of you are wondering why I bring this part of my medical history into the picture when what this is all about is Myasthenia Gravis. When an individual goes through chemotherapy treatment there is a strong chance that a long list of side effects can crop up over time. That is exactly what I have been dealing with since only a matter of a few months after completing the final phase of treatment in January 1999. The first symptom I dealt with was the diagnosis of a sleep disorder (daytime/Idiopathic Hypersomnia). In hindsight, this discovery was a hidden blessing because my doctor and I feel that most likely this sleep disorder has existed in a milder form since I was a child. The chemotherapy bumped up the severity of it high enough that it necessitated medical treatment. For many years, the symptoms seemed to be linked to motion sickness. Now thanks to the daily medication for this, the motion problem is greatly diminished under most circumstances.
However, the next side effect to appear was shortness of breath and fatigue. Ah, you say, now the picture makes more sense as to how my story has anything remotely to do with Myasthenia Gravis. My breathing problems appeared slowly and gradually became worse. When they increased, I started checking into the matter (Spring 2000). Because of the issue of cancer treatment causing side effects, I started probing the matter with my medical and radiation oncologists. My medical oncologist was highly alarmed due to the fact that I had been placed on a Tamoxifen regiment for five years (as of 2/99), and one of the side effects of this medication is that it can cause a blood clot. She wanted to delve into the matter within hours in order to assess the situation. Thankfully, the tests she ran were "negative". This led to an appointment with my family doctor. The tests that he ran concluded that I was dealing with allergies, asthma, and bronchitis. The plan of treatment was to take medications for the symptoms and return in a couple of weeks. When I returned for the follow-up appointment, my doctor asked how I was doing with my breathing problems. I explained that it was vastly improved except for when I talked. The description I gave was that when I talked it felt like I was running out of air before I finished a sentence, and I was still very winded upon climbing a flight of stairs in our home. Thanks to recently reading an article on Myasthenia Gravis, he concluded that it was quite possible that I was dealing with MG. I was given a referral to a local neurologist who concurred with his finding
After a lengthy period of time had passed, I started attending the Northern Virginia Support Group meetings. It was at one of those meetings that I met Joe Powers. We have had the opportunity to have several conversations after that day as a result of my joining a Committee and the Board. I am sure that other members of the VA Chapter of the Myasthenia Gravis Foundation can also attest to the fact that they too have become friends with other members of the Chapter. In addition, Joe and I have been able to share medical information that has been quite beneficial. I am appreciative that Joe gave me the names of the six neurologists in Virginia who specialize in neurological muscular diseases. I decided that it might be a wise move to switch to one of the specialized neurologists. I was unsure at first if it was necessary to do this due to my symptoms being pretty much under control. Once again, I was lucky to cross paths with one of the doctors on my "team" of doctors. My regular medical oncologist was on maternity leave and at one of my check-ups I was seen by her associate. I liked him so well that I switched, and it was at my second appointment with him that he asked how I was doing with my breathing. I decided to approach him, and I asked his opinion about whether it was advisable to switch to a specialized neurologist. He concurred that it would be because a specialized neurologist would be able to pick up on "fine" points that a regular neurologist could miss. I feel blessed to have crossed paths with the oncologist, and I have dubbed him with the nickname of "Marcus Welby, M.D.". I took action and called Dr. Kurtzke's office to arrange an appointment, but I was told that he was not taking any new patients. Upon explaining the situation, I was told there was a strong chance I could be seen by him if my referring doctor called him and explained my medical history that played a part in my wanting to see him. I spoke with Dr. Cuevo to explain what had happened, and he was more than willing to speak to Dr. Kurtzke on my behalf. As is true so many times in life, who one knows, having the courage and strength to stand up and be heard, can play a very beneficial part in one's life. Dr. Kurtzke began a regimen of more tests. The only regret I have is that I did not have the opportunity to see Dr. Kurtzke when I initially had the symptoms because they were much stronger and pronounced at that point and time. By the time he started running the first test, my symptoms were diminished from the time of the initial diagnosis. In addition, upon completing the full gamut of tests, my symptoms were even further diminished - to the point that none of the tests confirmed that I indeed was dealing with Myasthenia Gravis.
I am lucky in that instead of my symptoms getting increasingly worse, they have instead made a 180 degree turn for the better. Dr. Kurtzke concluded what I had felt must be the answer - that my case was in remission (at least for the most part although not 100%)! Although I am fully aware that Myasthenia Gravis is never cured and that it can just as easily come out of remission, I feel blessed for the current status that appears to be stabilized for now. I was then advised to consult with a pulmonary doctor to determine why I was still having some minor problems with my breathing (i.e. climbing the stairs in our home which we have lived in for 15 years). Of course, that led to an additional series of new tests - all of which took time to run through the elimination process. Quite by accident - during the process of the list of tests - a small blood clot on my lung was discovered. My pulmonary doctor and family doctor had a lengthy discussion about the best treatment plan for me as my pulmonary doctor was quite concerned about it. I feel lucky that the clot was found unexpectedly before it had a chance to become a life threatening situation. I am grateful that I was able to conduct the treatment at home versus hospitalization for a week. Once the treatment was underway, more tests were done to find the answer. The echocardiogram discovered that I have a very mild case of MVP (Mitral Valve Prolapse). Yet, this did not raise a "red flag". Records show that 20% of women in America are diagnosed with MVP. In most cases, little or no treatment is necessary. The only precaution I was advised to take was to be sure to take antibiotics before any dental procedure or before a colonoscopy procedure.
My pulmonary doctor completed the tests he deemed necessary, and his conclusion was that I was dealing with a combination of things that affected my breathing and difficulty with shortness of breath (allergies, asthma, MG, MVP, weight gain, and being de-conditioned). The treatment for me was to set up an exercise program which would help boost my metabolism, encourage weight loss and get in better shape. He advised me to set up a program with a personal trainer because (as he said) most or all of us have a tendency to procrastinate if left to do the exercising on our own. Due to the expense and fact that I don't relish exercising in a gym full of people, I have chosen to establish an exercise program that would not entail aerobics - which could trigger problems with my degree of Myasthenia Gravis. In addition, it will not aggravate my joints or put stress on my fatigue level. It will consist of: pilates with a large exercise ball, 5 lb. weights, walking, resistance bands, stretching, and so forth. All of these can be done in moderation and at a speed and level that I can manage. The reason I chose to mention the exercise program in my story is because I, like many who deal with MG, need to be cautious. When I was initially diagnosed, the symptoms were much more pronounced and doubt I would have been able to partake in an exercise program due to the fact that getting overly hot plays havoc with my symptoms. I am grateful I can now push forward and get back into better shape as I have gained more weight than I am comfortable with. Thus, if I can manage to shed some of the excess weight, it will result in better health for me in all perspectives.
Now I see my neurologist every six months for observation. Yet, if my symptoms accelerate, I can be seen as often as necessary. If deemed necessary, the tests can be re-run. The times when my symptoms are noticeable are when there is excessive stress; the weather is too humid and/or hot; the temperature is extremely cold; or I'm too rushed - resulting in my becoming overly hot. Since I am on a regimen of several medications for various health issues, I choose not to take Mestinon unless absolutely necessary.
My story takes a new twist at this point because I began writing it during the summer, and I put completing it on hold. Now in the fall of 2002, there is a highly critical and crucially important health issue that I am currently dealing with. In my experiences I have come to realize that " when the going gets rough one must get tough " and " kick butt ". Many of you who have been patient enough to read my story do not know me personally. I made the above highlighted comment to emphasize a point. It is pertinent in so many circumstances that one must be "willing to fight the fight" in conjunction with the medical treatment deemed necessary for whatever health issue is at hand. The additional health issue that I am currently dealing with is called IBC (Inflammatory Breast Cancer). I noticed physical symptoms in mid August that appeared suddenly (common of IBC. Thanks to access to the Internet, I was able to ascertain that the symptoms I was experiencing could be either an infection or IBC. As a result of the information I discovered and my physical symptoms, I placed a call to my surgeon's office on Monday, August 12, 2002 . I was able to get an appointment within less than 48 hours because I relayed my suspicions. Initially, I was treated with antibiotics for three weeks. Due to the physical symptoms not responding quickly, my surgeon performed a biopsy on September 3, 2002 . On September 10, 2002 , I was told that my worst suspicion (IBC) was the reality. The biopsy would have been done a week sooner if I had been free to be seen at that time. My surgeon was shocked and dumbfounded with the results of the biopsy. He stated that it was amazing that I had diagnosed it myself before my first appointment on August 14 th . Since that day it has been necessary for me to have a full barrage of tests done: MRI of the brain, CT scan of the chest/abdomen/pelvis, bone scan, PET scan (full body), and MRI of the hip. The reason all of these tests were necessary is because IBC is: rare, only 4% of the population is at risk (vs. 1 out of 8-9 for the more common breast cancer that is all too familiar); very aggressive, known for a strong tendency to spread. I am grateful that we have good insurance that allowed me to have all of these tests run as they are astronomically expensive. The PET scan alone was listed at $3,500. All of the tests were clear except for the PET scan, and it showed one questionable spot that necessitated further exploration in the form of a MRI of my hip. A PET scan can find any questionable spot(s) that other tests might not. A MRI determines the specifics of the spot in question. The MRI of my hip determined that there is a hole in my pelvis bone that is l.5 cm x 2.5 cm in size, and it is only one-half inch away from my hip bone. Therefore, I must be very careful to remember not to lift anything heavier than a ladies purse. The reason for that is because I am at risk of fracturing my hip bones. If this hole in my bone leads to extreme pain, it may be necessary to have it treated with radiation
The bottom line is that I started chemotherapy on October 2, 2002, and it will be continued on a weekly basis (to make it more easily tolerated for me) for as long as needed (1-2 months; 4-6 months or longer) in order to shrink the tumor small enough before surgery can be done (mastectomy). The reason behind waiting is because if surgery is done too soon when one is dealing with IBC there is a very high risk of spreading the cancer as a result. Whether or not my treatment eventually leads to radiation treatment is yet to be determined because of the radiation therapy I received from late November 1998 till early January 1999 was in the same general area that is involved now. Because this particular cancer is a very difficult one to successfully treat and because it is Stage 4, I plan to do extensive research to find an alternative treatment to work in unison with the proposed medical treatment
I hope that I have managed to tell "My Story" in a way that has been both enlightening and thought provoking. In regards to IBC, it is one that is not of common knowledge to women. Yes, a man can also be diagnosed with IBC, but a man's chance is much lower than 4%. I hope to find a source that will make it possible for the general public to become aware of IBC.
As you can see from reading my story, the many health issues that I am/have been dealing with would appear to be intermingled in some way/form even though medical statistics/data may say otherwise. I thank you for patiently listening to my story. My email address is posted at the bottom of My Story. If you choose to contact me through email, I hope that you will be patient with the amount of time my response may take due to the treatment I am undergoing.
God Bless America and God Bless All of You! - Pam T.
Email: 4shamrocks1@comcast.net
A Patient History - With God's Strength Everything is Possible by Sheila Jones
I am 61 and I have had MG since I was 13 years old. At the beginning I couldn't stand or walk normally and I kept falling. My face & eye muscles were so weak, my speech was so slurred and I had great difficulty breathing. Fifty years ago, MG was practically unknown. My father took me to an old doctor but he knew right away I had MG. My family didn't understand MG - or know how to help me; they just didn't know how to treat a person with a disability. I used to cry and for someone to help me, just to pick up my head to give me my pills. I was blessed to have my 8 year old little brother, Ed - he came to my rescue all the time. He helped me around and pulled me up and down the steps and saved my life a couple of times. When you are so weak and sick, no matter how independent you want to be, you are going to need help.
My family was so poor, they couldn't help me financially BUT I have NEVER been a burden to my family with medical/hospital bills. As a kid of 14, I called & wrote to different hospitals, and medical foundations, the Red Cross Chapter and other foundations. I found a way to get my medical and prescriptions needs met on my own.
First, I talked to my doctor and explained that my family was so poor that they just
couldn't provide my medications that I needed. I knew about the National Institutes of Health and thought they might be able to help me. My doctor asked me to write him about my medical problems and needs, and then he sent my letter and his endorsement to NIH. NIH took care of my medical and prescription needs as an outpatient for about 5 years. After 5 years, NIH had to release me because the illegibility rules became very restrictive.
As I searched for help again, I found the Muscular Dystrophy Foundation (MDA) and they took care of my entire medical and prescription needs for about 6
years. By then I had finished school and was able to pass a Civil Service test for Federal employment and was eligible for insurance. Blue Cross/Blue Shield has been taking care of my medical expenses now for over 35 years.
I couldn't physically attend High School but I found through tutoring I was able to finish and get my high school diploma. I am a person that doesn't like to sleep late. I used to have to lie in bed until at least 12 noon before I had enough strength just to sit up. After graduation, I was determined to find funds to enroll in a business college. It was so hard to get ready to go to school because it took me hours to get dressed and ready. I had arranged for my ride to pick me up everyday at 8AM . I started the day every morning at 4AM ; it took me 15 to 30 minutes just sit up in bed. My bedroom was the only room with a step, and I had to struggle with it each time to get to the bathroom. Then I balanced myself in walking by holding onto the walls. Most days, I had to struggle to get up from the toilet (in those days there was no elevated seat); then I had to lean my elbows on the sink in order to brush my teeth and wash my face; I struggled to sit on the top of stairs and scoot down 14 steps downstairs. To put my makeup on and comb my hair, I leaned my elbows on our mantle that had a large mirror. Many days, I got stuck while
trying to dress, but I was always on time after struggling endlessly. Thank God for my little brother, Ed, he was always there to help me across the street to meet my ride. During those years, I never missed a day of school or was ever late and I got my business diploma in spite of all the difficulty.
It wasn't easy - I was so young with MG with little family encouragement. I was in and out of hospitals, on a respirator at least 7 times from 6 weeks to 2 months each time. When I was 19 and had my thymus surgery, my sister and my best friend, Randy, were the only two people that came to the hospital to give me support.
When my family moved into a bigger home, the house had nothing but stairs
(stairs to the bathroom, to the bedrooms and into the house - but I made it by crawling up and down the stairs - I walked on my knees a lot. Those stairs would be a piece of cake to people with no muscular disability.
I earned some money at home by making crafts and sewing but since I had my business diploma I decided to take a Civil Services (CS) test for a Government job - that would provide Health Insurance. I took my typing test and failed it twice because my hands were so weak but I passed my written test. My brother David took me to the CS test. The day of the test, I had broken my ankle and had a cast from my ankle to my knees; I was very weak and could hardly walk anyway. What a sight! But that test changed my life because I was able to pass it and got a government job with excellent health insurance.
When I got my job, some people asked how I would get to work everyday from Virginia to Washington DC when I could hardly walk. But, the Lord gave me the initiative to find a way to work and I was never late nor missed a day of work in spite of difficulties and being sick After 24 years, I took early retirement; I had almost 900 hours sick leave that I had never used. I took the regular retirement with health insurance instead of disability retirement. It would have been real easy for me to apply for disability retirement but I knew I wanted to work even though retired.
While I was working, a friend encouraged me to learn how to drive to be more independent. While I was learning to drive, some people asked why I would attempt to drive when I could hardly walk and had to pick up my leg to get into the car. But I
said to myself, no one is volunteering to take me anywhere and no one is
obligated to help me, but in order to accomplish my goals - even with my
severe MG - I had to try to depend on myself. It was real hard but now I've been driving for 33 years.
Before I retired from my government job, I took my life & health insurance and my NASD and Security & Exchange Commission test and passed with "flying colors". For the past 18 years I've worked as a life insurance and investment counselor. Even while I worked for the Government, I always had a part time job,
working for Sears, a construction company and an insurance company several days every week. After my evening job, I was so weak that I couldn't even walk the only two steps into the house. So I would try to get on my knees onto the top step and walk on my knees into the house and then pull a kitchen chair over to push myself up.
I left home at 43 years of age and got married a year later. My family never thought I would be able to leave home because I was so sick and
so weak. I have been away from home now for over 18 years and have never had to go
back home for any help. I know my mother is happy that I have a husband to help take care of me and accepts me as I am, especially, when my MG was so severe in the beginning of our marriage. Now, with some moderation of my MG, I can outrun my
husband and I can take care of him now. At 61, I am doing better now than ever since I had MG at 13. Thank God, I have not been on a respirator for about 20 years. My husband has been very supportive of me. I always asked the Lord for guidance and strength and tried not to say or complain that I was too weak to do this or that and just pressed on. It wasn't any use to cry the blues about my weakness because I knew my
family just didn't understand anything about MG or they would have tried to be more
supportive. I thank God for His help. As a young kid, with no encouragement, the Lord gave me the intelligence to seek medical help, to get my high school diploma, my business diploma, to get a Government job and my part time jobs and my insurance &
investment license. When you are disabled, you are going to need some help, no matter how hard you try...but you need to be determined not to let your disability get the best of you. I believe that everyone has a chance and can hope for better days. They can't let anyone discourage them; instead they must set goals no matter what fears they may have in life. Many people go through trials and tribulations and experience fears and self doubt in life, but you must be positive. Holding grudges, greediness or jealousy in your heart is negative and it will definitely bring you down every time. So be positive! Be strong and of good faith. I thank God for my blessings and the will power He gave me!!
HISTORY OF INDIVIDUAL'S MYASTHENIA GRAVIS CONDITION
By DAMON J. WAINSCOAT
In July 1998 I was being treated for a presumed left eye infection. I had some loss of peripheral vision, some slight double vision, and a dropping eyelid. A new Eye Glass prescription did not help. My Doctor (a PA at the Woodbridge Tricare Center ) became worried that nothing was improving; but getting worse. She set up an appointment in September 1998 with the Bethesda Navel Hospital eye clinic to see what they could do.
A Doctor Klunck at Bethesda Navel Hospital had an idea what the problem was immediately. He took a picture of my face then put an ice cold pact on my left eye for about 10 minutes. He then took another picture and compared the two. The first picture showed a dropping eyelid and loss of vision. The second showed a normal face and eye lid. After about 20 minutes the eye lid began to drop again. He said “I know what the problem is, but let's do some more tests." and referred me to the Neurology Clinic at Bethesda . They conducted a blood test and a MRI. They confirmed my condition to be Myasthenia Gravis. They turned me over to the Walter Reed Army Medical Center for further evaluation and treatment, as the two hospitals work together on Neurology cases of these types.
Transferred to Walter Reed that afternoon, I was admitted to the Neurology Ward. Upon arrival a battery of doctors began evaluating my condition. They did the standard preliminary muscle tone test, a blood test, a MRI and an EMG. Upon completion, they confirmed the previous diagnosis. They began treating me with Mestinon 60mg twice a day for two weeks. Then we kicked it up to three a day and eventually to 60mg 4 times a day. This occurred over a 90 day cycle. I was only taking this drug during working hours. I stayed this way for 18 months after diagnosis. Then in January 2001 I had a Level Three Crises situation occur. I spent 10 days in the Hospital. I had a slurred speech, swallowing problems, trouble breathing, vision was blurred and double and an infection. What caused the crisis was determined that some Medication for an enlarged prostate may have interfered with the Mestinon. They withdrew the medication for the prostate and I returned to normalcy.
During the period from February to September 2001, I had a very heavy workload and had to travel a lot through many time zones. This changed my timing on taking my medications. In September I made a trip to Korea and realized during the trip that I was getting worse with the slurred speech and double vision, swallowing, and breathing. Upon my return to the U.S. , I sought help from my doctor. He doubled the dose of Mestinon and added Imuran to my medication intake. He said, “We have been only treating the symptoms until now, let's try treating the disease”. This was on 16 November 2001 . On 26 November I became very sick - real hard to breathe, slurred speech, hard to swallow, and tunnel vision. I went to emergency at Walter Reed Army Medical Center and was quickly admitted to the Neurology clinic.
While being evaluated by a number of doctors, I went into a total level four Crisis condition. I blacked out, stopped breathing, couldn't swallow, and virtually went blind. They rushed me to Intensive Care. I was incubated for life support system. My whole system had been shut down by this attack: Heart, Lung, Kidneys, Liver, Stomach and esophagus muscle all quit functioning. I remained in this condition for about 6 days. Once I could breathe on my own they inserted a feeder tube so they could start treating my condition.
They started by using I.G.IV, 1 quart a day, usually in the evenings; using intravenous Mestinon, 180 Mg equivalent injected at 2-3 minute cycles. They fed antibiotics to kill infections, Zantac, lisiniprol, 20Mg a day for high blood pressure, and Aspirin, 325 mg a day for countering blood clotting as I have poor circulation in the lower extremities. This helped stabilize my condition for the next 5 days. Upon returning to the Neurology ward I was evaluated by a team of doctors (Blue Team). This consisted of three doctors from Neurology, one from Urology, one from Internal Medicine, and one from Respiratory, and they began evaluating my situation.
I had a number of supplemental conditions caused by wounds from Viet Nam that complicated things - lamenectomy, spinal fusion L-3-4 lower lumber, partial paralyses to lower extremities, exploratory surgery, six hernia operations, and a permanent broken upper sternum, and rheumatoid arthritis.
After one week of this treatment they introduced Prednisone, 40 MG a day. After another week they began using Cellcept 2000 Mg. per day. My present intake of medication at present consist of Mestinon (120mg every 4 hours around the clock), 2000 Mg Cellcept a day, 40 Mg of Prednisone a day, 500 Mg Zantac a day, 20 Mg. Lisinopril a day, 325Mg. Aspirin a day, and 500 Mg calcium a day. My condition has remained stable since then.
These are some side effects: some bleeding, runny noise, weak and tired 60-70% of the time. Trouble walking, hip muscles, back shoulder muscles, arm, and especially the hands have all been affected. As well as a very active bladder, I suffered little headaches in the morning (quickly subside after awake). I had little appetite at first, but am now getting back to normal. Hands cramp and deform during the day, but I'm not sure if this is a side effect or from the rheumatoid arthritis.
Present symptoms: Eye lid drooping reduced, swallowing still difficult but better, chewing, o.k., facial muscles, very much improved, speech greatly improved, but still sweating quite a bit. Neck muscles, back muscles, arm and leg muscles still weak but improving.
Final Diagnosis: Myasthenia Gravis Ocular and Skeletal. I am in my 5 th year with the disease.
I am a life member of the Northern Virginia Chapter for MG and am thankful for the support group. For a guy who is used to going 95 miles an hour with his hair on fire, this has been a very difficult time for my family and me. I have worked or went to school all my life, never missing a day. Adjusting to this new low drag environment and learning to listen to your body is very difficult and sometime depressing. I want to do what I can, while I can for making the community aware of MG, and supporting research that will lead to a cure. I believe in the goals and objectives of our Chapter, “A world without MG”
Damon J. Wainscoat
