Patients’ stories

Living with MG – Patients’ Stories

These stories appear in full below in the patient’s own words and were sent in to us via the comment box on the Living with MG main page.

From Jennifer:
“Having a chronic illness is devastating. Having an “invisible” chronic illness is frustrating. Having a rare, invisible chronic illness is isolating! I think because people don’t understand it. If you don’t understand it I would not be offended if you ask questions. I am happy to answer them.
When someone says they have cancer, their friends and family start wearing ribbons and participate in walks, etc. (Which I totally support before someone starts yelling at me) When someone says they have Myasthenia Gravis, I am not expecting a pity party, not expecting benefits, not expecting casseroles delivered to my door. All I truly want and need is compassion. Especially from friends and family, which seem to be the hardest people to get it from. This disease sucks! Big time! It is a daily struggle for me and my family.”
15 December, 2011 at 11:58

From Karen Robinson-Galdo:
“I don’t remember a lot of “last times”… the last time I ran (I used to run every day); the last time I ate steak (my chewing and swallowing were impacted early on); the last time I took a shower and didn’t feel exhausted afterwards. I remember the onset–I had a little twitch and some sagging in the corner of my mouth. A few months later, October 22, 2009 to be precise, I developed diplopia with exotropia–I have only seen normally once since then…it lasted two hours…it never came back. I was diagnosed two months after my eyes went–my chewing and swallowing were next and then a frightening episode at work…my arms weighed a ton and weren’t working right. Several months later, my voice, speech and neck would give out–I first noticed my neck in the car when my husband would turn…I couldn’t support the weight of my head against the force of the car’s movement and my head would bobble all over. During phone conversations, people weren’t understanding me. When MG struck, I was working full-time as an analyst at a community college (the job of my dreams); I was 160 pages into my doctoral dissertation; I was a wife and active mom of two great kids, a son who was 7 and my daughter, just over a year. I’ve watched MG chip away at my appearance–my eyes that point in different directions and my smile that’s more like a snarl–to look in a mirror every day and be shocked at what I see; then there were my goals, my identity, my self-esteem, my life. What remains, although sometimes fleeting, is hope…and love…and support from people who believe in me when I no longer believe in myself. And hope tells me that it’s never too late to make one amazing comeback! Thank you for reading…that you for caring enough to learn more!!!”
20 December, 2011 at 01:23

Bob Cribbs says:
“Myasthenia Gravis is frustrating from the beginning. Before I was diagnosed I spent several years of being tired and had un-explain chest pain which in itself is rare symptom in MG. The doctors said it was stress related or depression. Also several visits to the ER for chest pains and shortness of breath which was diagnosed as panic attacks. You know something is wrong with you … yet all the doctors want to do is give you anti-depressants. It’s only when I started to get double vision that I was getting nearer to a diagnosis. The eye doctor was saying eye fatigue, which was close but prescribed tri-focal. That didn’t work so finally my family doctor sent me to a neurologist.”
“The neurologist ran several tests and had an idea of what was happening. He started me on Mestinon which helped a little. None of the tests were conclusive but MG does not have a definite test for it. Since I had the double vision and enlarged thymus he suspected Myasthenia Gravis, the first time I had ever heard of it and he recommended having the thymus removed and wanting to send me to Pittsburgh for confirmation on his diagnosis. Also that the Thymectomy would entail of cracking my chest open to remove the thymus and a year to recoup. The neurologist in Pittsburgh confirmed his diagnoses after running a couple of his own tests. He suggested a different kind of Thymectomy, which entails collapsing a lung and going between the ribs orthoscopicly, with 6 months to recoup – which sounded a little better. Off to talk to the surgeon, he tells me those other two methods were old. Now he makes a small incision at the base of the neck and cleans out my chest through there and I would have a week of recovery time.
After the surgery the double vision went away along with the chest pain. I felt great and my neurologist said that I should be good now and if I have any problems just give him a call. I thought that was it, little did I know I went into remission. I spent several years with no problems and thought life was great. Then a couple of years ago I noticed little muscle twitches and things like not being able to use a hammer for a long period of time. I started to get more and more fatigued I hadn’t thought about MG for over 6 years.
Now I’m back on Mestinon, Prednisone, Imuran and I get IVIG every four weeks. I have to watch what I do now, since I tire real easy these days. It is almost impossible for me to do manual work anymore like mow my yard or any kind of handyman stuff around my house. Those were the things I enjoyed the most. I use to love to go out dancing with my wife, now I’m lucky to be able to finish a slow dance. I even dread going to the mall anymore, I am one of those old men on the benches now and I’m only 47 years old. There are days I do feel good but then make the mistake of over doing it somehow and pay for it by being totally wiped out for days.
I am still able to work but not sure for how much longer. Luckily I have a great employer who is willing to work with me. Pretty much all my energy goes to my job so I can pay my bills and have insurance. Every day is turning into a fight to get through the day. Every day I can feel myself getting weaker and weaker. There are days I look normal, then there are days I walk funny or my eye lids don’t stay open. The most frustrating thing is people say you look good when on the inside you’re fighting the urge just to say the hell with it and go lay down somewhere because you’re so tired.”
25 December, 2011 at 17:54

Venessa Sue says:
“I’ve dealt with the “fun” of Myasthenia Gravis since my early 20′s ~ initially it was only my vision that was impacted with very blurred vision and double vision. My eye doctor changed my glasses prescription repeatedly and finally sent me to a specialist who said “something” was wrong with the “focusing muscles” of my eyes. He suggested having strabismus surgery to “fix” the problem.”
“I had the surgery; the vision was NOT “fixed” LOL
I was told to “wear a patch” over one eye in order to see only one image; this became my “norm”. For years I patched my left eye in the morning; and then switched and patched my right eye in the afternoon so that I could “rest” one eye. (During this time I was married with 3 young children).”
“Within a couple of years I began having increased weakness in my legs and arms (stairs became my enemy early on!) It took many years before I got an actual “name” for what was happening — I was told that it could be “hormonal” and stress-related.”
My doctor sent me to a Neurologist who tested for everything from brain tumor to muscular sclerosis…all the tests resulted in a definite “no, that’s not it!” (but they didn’t know what “it” was!) Strangely, no one put the double vision and muscle weakness together until years later when my local Neurologist sent me to a Neuro-Opthalmologist for consultation. He spent 10 minutes with me before stating categorically: “You have Myasthenia Gravis” (I had NO idea what that was!) He confirmed the diagnosis via tensilon test and started me on Mestinon.”
“I had trans-sternal thymectomy within a few weeks and experienced my first Myasthenic crisis while still in the hospital recovering.”
“My worst crisis occurred in Feb. 2005 — fortunately, I was in the hospital’s ER Dept. being prepped for admission for plasmapheresis when I stopped breathing & lapsed into a coma — I ended up “sleeping” & on the ventilator for an extended period. Coming off the vent, we learned that the tube had caused a fistula (“hole”) in my esophagus and had damaged my larynx (voice box) So, although attempts were made to repair the damage, I eventually had to have laryngectomy surgery to remove my voice box and to repair the fistula. I was unable to eat or drink anything during this time; so all nutrients were given via TPN and/or a gastronomy feeding tube. All in all, I remained in hospital that year from Feb – early October and would have extensive physical & occupational therapy before discharge so that I could re-learn tasks such as walking, bathing, dressing, etc. I also was trained to use the electro-larynx devise that I use in order to speak. I was discharged with a feeding tube and it was another 18 months before that could be pulled and I could eat “normally” again. If I require oxygen or CPR, it must be given via my trach — I no longer have any “air flow” via my nose or mouth. This also means that I no longer have any sense of “smell”, and my sense of “taste” is compromised.”
“My disease is managed by twice-monthly infusions of IVIg (Intravenous immunoglobulin).”
“I’m now a grandmother of 7 (our 8th is due next month) and only our oldest 2 “Grands” have ever heard my “real” voice. For the rest of them, it is “normal” for Grandma to have a tube in my throat and to speak via a machine (my “Robot Talker” as they call it). I lost my health, my job, my voice and the ability to drive a car (it’s just not safe for YOU to be on the road with ME if I cannot tell which of the two images I see is the “real” one! LOL) But, I have retained my humor, my family and my faith.”
29 December, 2011 at 18:33

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Amy Carcach wrote:
“It began slowly, then quickly took control of my life. Being healthy all my life I didn’t realize anything was wrong. I thought I was just really tired or caught some bug, but instead I was experiencing the beginning stages of Myasthenia Gravis (MG). One day I tried to get out of bed & I fell. I tried to get ready for work, but found my hands didn’t want to cooperate with me. I tried to button my pants, but couldn’t. I couldn’t spit when brushing my teeth, and my arms didn’t want to stay up so I could brush my hair. The next day I couldn’t turn the key to unlock my door. Then when it was time to eat I couldn’t chew my food, and the juice wouldn’t go down—it just came right back out. At work I would sometimes lose my voice when talking on the phone or feel short of breath. It became so bad that somedays I would come into work and have my friend help zip up my dress or open my water bottle. I ate lunch alone because I was embarrassed about not being able to eat properly. What did it for me was driving home one day feeling very fatigued, and I almost blacked out at the wheel. My husband finally told me we are going to the doctor. It took many visit to various doctors to finally diagnose me with a rare disease called Myasthenia Gravis.”
“That day my life changed forever. I was put on medications to control my symptoms. They helped me to function, but had many nasty side-effects. I began IVIG infusions and then a few months later I had a thymectomy (removal of thymus gland). I was told if this was done I would have a great chance of going into remission. I had the surgery & didn’t recover right away. I lost my job & never fully recoved my stamina. I gained 70lbs from the medication & looked so different my friends didn’t recognize me. It was very hard emotionally to deal with all these changes in my body and my life. If it wasn’t for my faith in God, and a very loving and supportive husband, I don’t know how I would have made it.”
“I am still not in remission, but I am adjusting to the changes. I am now learning how to deal with my “new”life—I’m taking one day at a time. It’s hard to say no to friends, to accept the changes in my body, to not be able to run, go grocery shopping without getting tired, smile without looking like I’m crying, vacuuming my living room without getting out of breath, not having children because my body is too weak, or working a job ( I have a bachelors, but cannot use it; loved my job as a legal secretary), but I am trying my best to do what I can to beat this disease and maybe someday go into remission.”
24 January, 2012 at 19:31

Miriam Davidson says:
“Four years ago I had a strong, active daughter with a bright future. She was in a French Immersion school and doing very well. She played sports: rugby, volleyball, soccer. She loved to rock climb, kayak and hike. I remember how funny it was to see her lugging her tuba home from school because she was so little and it was so big! She played the viola as well. My little girl was a tree climbing, running, singing tomboy. She was so full of life.”
“She went on a long canoe trip with friends one summer. One of the adults mentioned to me that she seemed tired all the time. She was growing up, I figured it was a young teenager thing. Kayaking with a friend her arms gave out on her trying to push herself out of the boat. She thought she was tired from all the paddling. For a while I noticed that instead of stretching her mouth when she smiled she would kind of purse her lips. I wasn’t alarmed, I thought it was one of those inexplicable things kids do. I thought it was on purpose. Then she started to slur and one of her eyes drooped. That scared me. I took her to our family doctor who booked an appointment with a neurologist. It wasn’t for months. The slurring got worse and one evening I saw her putting her finger in her mouth while she was eating. When I asked her what she was doing she told me she couldn’t make the food move around in her mouth. That was enough. Her father and I took her to the local children’s emergency room. Within hours she had been diagnosed with something we had never heard of – Myasthenia Gravis (MG).”
“That was the beginning of a nightmare for our family. Kendal’s condition rapidly worsened. Suddenly she couldn’t chew, could hardly talk, fell frequently and sometimes could hardly even hold a pencil. School became a more miss than hit thing. Some days everything was fine and she could attend school. Speeches or presentations were a problem because she slurred and drooled after just a few minutes of speaking. No teenage girl wants people to see her like that. She refused to eat in public. The teachers saw her on her best days, she didn’t look that bad. They started to drop not so subtle hints, one teacher told her she needed to try harder, to come to school even if she felt “a little under the weather.” She had to drop gym class, she had to drop music, she could no long tighten her lips around the mouthpiece of the tuba or lift her arms long enough to hold the viola and bow. Finally there was no way she could continue on with the French Immersion program and had to drop that. The first cold after her diagnosis almost killed her. None of us knew how dangerous a cold could be. I watched her carefully but even that was not enough. The speed with which she deteriorated was shocking and so scary. She began to choke and her arms and legs and then her neck went slack. In the seven minutes it took the ambulance to arrive she went from breathing and speaking with some difficulty to completely limp and choking on the floor. She was so weak she couldn’t even expel fluid from her lungs by coughing. Kendal spent several weeks in hospital that time. She was in ICU for a week, intubated and on a ventilator. This was three months after we first took her to ER. As a result of this her neurologist put her on strong medications to suppress her immune system. These meds, especially Prednisone, soon had her packing 80 pounds onto her tiny frame. She cried, sometimes all day and all night. I could no longer work. We were afraid to leave her alone. She was suicidal and constantly sad. While we were content to simply have her alive, it was a very unhappy time. Her prospects had narrowed down to simply breathing. Even eating was difficult. She choked constantly, sometimes too weak to swallow saliva. There have been many hospital stays, ambulance rides, ER visits. One winter constant, recurring infections in her ears, nose and throat landed her in hospital over 10 times in 3 months. One of the medications she is on took 18 months to make a difference and many months for her body to adjust to. During the period of adjustments she went 13 times to ER for intravenous medication to control non stop vomiting.”
“The medications have helped. Kendal is now 18 and fighting to live as normal a life as possible. She has slowly weaned herself off Prednisone, gotten through most of the depression and lost all those extra pounds. Life is not normal but it is much better. She has missed so much school that she will have to finish at a continuing education facility for adults. She still slurs when she talks for too long, a few minutes is often her limit. Eating is a challenge, small meals of foods that do not require chewing are a must. She will not eat in public. Falling unexpectedly is a part of her life. Some days her legs don’t work and she stays in. Some days her hands are too weak to turn the doorknob and she has to call for help. One of her medications has cancer as a listed side effect. Most of the kids she was at school with before she was sick have dropped her. Parties and dancing, things she loved, are difficult and often embarrassing now. Her future is no longer a straight shining path. It is full of bends and fog, uncertainty and some fear. Daily tasks are exhausting some days but she is a fighter and she rests and gets back up when her disease knocks her, sometimes literally, to the floor. As her mother, I walk a fine line between giving her independence which is necessary and helping her which is needed. Nothing is clear anymore but we still have our daughter and she is more precious than she ever was before to us all.”
25 January, 2012 at 15:30

Cindy Beasley wrote:
“Wow…how close to my own experience this story is…except instead of my child being sick; it was me. I was around 14 when I had my first symptoms, and the rapid onset following that are horrifying to think about. It took YEARS for me to be diagnosed. I had been thinking of putting up my story, but honestly, I thought people would think I was making it up…until now. THIS is MY story. THIS is what happened to me…Miriam, I want you to have hope. I was your daughter, I was in this shape,…in 1986. Today, after ALL the medications out there, after a thymectomy at 18, on my birthday to be exact, after being on deaths front door step MANY MANY times…Today, I hold two Bachelor’s Degrees, and several professional Certifications…Today I have been married for 23 years…Today, I walk, I smile, I chew, I swallow…I am not cured, don’t get me wrong…I just work with my limitations, instead of fighting for things that my disease, MG, will not allow,..I maximize on the time I spend with the people I love, living everyday as if it is my last week on earth…I work full time as a Substance Abuse Counselor…I guess what I am telling you Miriam, and your BEAUTIFUL Daughter, do NOT give up on life…Do NOT give in to MG…but take one day at a time, learn your limitations, then regroup and figure a way to do what you want to do and still give your lives. The medications are awful and take a toll on us. We get tired and have to say no…and its ok to do that you know! Say no. I trust that your child will have the same course I did, or better! Hang in there guys and never give up…if you ever need to talk, b/c I have “been there done that”…feel free to contact me…I am on Facebook, or you can email me. Love and Prayers to you and your family…and CAROLE BROWN, …thank you. There are no words that can express the appreciation for what you are doing that you deserve. Your mother is proud. Love! Cindy Perry Beasley”
25 January, 2012 at 21:12

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Sharry Hackenberg Smith says:
“I cope with Myasthenia Gravis, Systemic Lupus and Graves disease; spinal cord compression x3 and other central nervous system problems…my rotten luck! ;)
I do not wear rose-colored glasses, nor would I consider myself the epitome of optimism. However, I am cautiously optimistic about living with chronic illnesses for which I am told there is no cure.
When I was diagnosed with Graves disease in 1996, I wasn’t terribly upset. It was what it was and it was my responsibility to work with my endocrinologist by taking my meds and HRT as instructed and keep my appointments. Check.
In 1999 when I was officially diagnosed with myasthenia gravis, I’ll admit that it was a small shock (doctors at the time suspected Multiple Sclerosis), but, again, wasn’t falling apart at the seams. My neurologist appeared very knowledgeable (and, in fact, is knowledgeable) regarding MG, ordered the appropriate tests, and taught me much about MG aside from my own “research” on this disease. Again, it was my responsibility to work with my neurologist by taking my meds and keeping my appointments in addition to re-training myself on the daily activities with which I dealt.
In 2001, I was diagnosed with Lupus (SLE) after years of tests and appts with my present rheumatologist and with audio/visual spatial cog. dysfunction by me present neuropsychologist. Okay, this was all beginning to catch up with me. To make matters worse, I was diagnosed with depression.
Inspite of the above, I was determined to not give up hope. My faith had something to do with that, but my outlook on life in general had an equal share in that determination and hope.
To say that “every day is a treasure chest” may sound a bit Polly-Anna to others, but I am far from being a Polly-Anna. My outlook is that each morning I awake to a new day not knowing what positive things I might come across. But I always knew (and still know) that I will discover something that will benefit myself or will give me the opportunity to benefit someone else. I never know when I put my hand into this treasure chest, what small gift I will grasp. This is my gift to relish and/or glean some sort of understanding that I had not otherwise comprehended. This is my gift to give to someone else, should I wish to or know of someone that would benefit from such enlightenment, if you will. These gifts are not monumental in and of themselves, but by the very nature of each day’s discovery I may be better able to help improve myself, or enrich someone else’s day.
Something as small as a sincere smile…I’m talking a smile that comes right up from my toes and out my eyes…to someone who is having a lousy day or just needs an emotional boost to their self-esteem. Offering to give a cashier fifty-cents so the kid in front of me can enjoy the candybar he could not otherwise afford. Sending my family a brief text message in the morning, telling them I love them.
By enriching others by any means,no matter how seemingly insignificant, I enrich myself.
Whether it’s your treasure chest or your oyster bed, remember what is truly important and never…ever…give up.
Peace out!”

“If you get the choice to sit it out, or dance–I hope you dance.” (and I do). Celebrate the child inside. Jump HIGH…life’s hurdles aren’t always fairly adjusted. Tell The Coach you are trying your best and ask Him to help you to be better.”
17 February, 2012 at 00:05

Alice White-Kaminski wrote:
“I posted this on my Facebook to support Carole and her journey…”

“I was diagnosed with MG last August, after suffering for over 4 years. I had never heard of MG before I started looking for answers online. For over 4 years I suffered the fatigue, vision problems, and breathing difficulties associated with MG. During that time the symptoms were mild, and not presenting together. The doctors blamed my problems on my weight. I was close to 300 pounds. Then, in Feb 2011, I was hit like gangbusters. Within 4 days I went from normal, to a complete mess. I had double vision, my speech was slurring, and I was having trouble swallowing. Even at that time I was months from diagnosis. I was being treated by my Family doctor, a neurologist, and a physical therapist. My physical therapist urged me to seek another neurologist, since the therapy he prescribed was not helping me. So I got on my computer once again. I went to WebMD, and entered all my symptoms into their Symptom Checker. MG was in the list of possible causes, but so were anyeurism and stroke! The strange thing was I had EVERY symptom of the MG! How could that be? I made an appt for the next morning, that was in June 2011. When I went to see my family doctor, I took my husband and mom for backup. When I told him I thought I had MG, he looked puzzled. He said that if I had MG I would be very ill. I told him I WAS very ill, and my family supported that. He said that he would refer me to a new neurologist, and I went the next day. The neuro did blood work, and it came back negative. He immediately said not to worry, we would start the Mestinon anyway. If it worked, we would know I had MG. Well, it did work, for awhile. Maybe 3 weeks was all it gave me. I was now reduced to eating only watermelon and cottage cheese. I was hardly drinking. I had lost over 80 pounds by then. I was getting very weak in my arms and legs now too! My mom was terrified and urged me to go to the hospital. I explained my symptoms to the ER, and that I was suspected of having MG. THEY HAD NO IDEA WHAT IT WAS!!! They had to look it up!! Are you kidding me?? They told me that I needed to see my neuro, and sent me away! I was having a myasthenic crisis!! My diaphragm was weak to the point that I was hardly breathing when relaxed or asleep! But they sent me home, because they had NO idea what was happening. Instead of calling for a consult, they sent me home! 4 days later I went into crisis again, and my husband called 911. This time they took me to the ER by ambulance. Still I was sent home. The next day I went to the ER at the Detroit Medical Center. I was admitted immediately, and started on plasma pheresis the next day. It was a rocky few months there, but I am stronger now. I have a rare form of MG, it didn’t show in the bloodwork. It does not respond to the classic meds. I rely solely on Plasma Pheresis and healthy living to stay out of hospital. THIS is why I am so supportive of Carole Brown’s journey. We need awareness. We need education for our physicians, not just specialized neurologists! Our Primary Care doctors ER doctors, and pediatricians are the ones that need the most enlightenment! They need to order the tests, make the referrals, and get to the diagnosis for patients faster than has been happening. We need understanding. We need treatment options…we need a cure!!”
21 February, 2012 at 05:34

Sue G says:
“Why is it that after nearly 3 years of having mg, and 1 1/2 years after diagnosis, even my family and good friends STILL don’t understand that I don’t do late afternoons well? Meaning that if you want to stop by, ask me a tax question, call me to chit chat, that I am tired, not really strong and just want to rest. Even then I still have to get my dinner and the pet’s food ready, and during tax time I’m especially worn out and trying to remain strong.”

“It feels like I’m on an uphill battle to make people understand. One of my good friends wanted to drop off work at 4:30 PM last week and I barely felt coherent, just because I was so tired. I was strong but extra tired because of the long day I had; heck I’m up at 4:30 AM and do 100 things by noon. All I want to do at 4:30 PM is lay down and watch some mindless TV show to refresh & relax. Funny how no one really gets it.”
6 April, 2012 at 18:43

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Theresa Krohn nee Sparrow says:
“I was diagnosed in 1988 at the age of 31; it was very difficult to get a diagnosis. I was a very active athletic young mother of 2 sons. I initially presented with severe headaches and extreme fatigue, pain in my chest and blurry vision. Of course I got weaker and weaker ended up in hospital numerous times and resting in hospital on vitamin infused drips would improve my symptoms.
My youngest son was born with an extra chromosome on 22 which is very rare. Some of the challenges I faced with him was tube feeding “he had a horse shoe cleft palate” no sucking reflex etc. He also had a constricted or stenosis of the rectum. I won’t go into details but it was very hard going physically and emotionally. My symptoms started when he was about 18 months old and I lost my mother when he was a month old, so everyone including my GP thought I was just exhausted. When my symptom’s became too severe to ignore, another GP who I had consulted started doing research on his own. At the time we lived in a very small harbour town miles away from any medical facilities. Eventually this GP realised I had MG and sent me to a neurologist 2 hours drive away. He confirmed the diagnosis with a tensilon test. In those days, especially in South Africa, medical tests for MG were not available. My blood was eventually sent to the UK for antibody testing only about 3 years later it came back positive and the ct scan showed my thymus gland was enlarged. The MG went on to progress very rapidly and I was completely debilitated. I was given massive doses of prednisone and when I stabilised a bit they did a thymectomy. I did well for a year after thymectomy, then suddenly my symptoms returned and I went down hill very fast: breathing unaided was not possible, went into crises, put me back on high doses of prednisone. Again nothing helped, IVIG was not available in those days and plasmapheresis was impossible I lived too far from a renal unit.
My neurologist at the time started with cyclophosphamide infusion. Slowly but surely I started to improve very slowly after the 3 cyclophosphamide infusion my neurologist cut back on my prednisone and mestinon. Eventually I went in to remission and was symptom-free for about 6 years, only getting medication-induced symptoms.
I almost forgot I had MG. I had started a car rental franchise and was running half marathons. Then one day while I was painting, I tried to text a friend and was shaking so badly I could not. I started sleeping 18 hours a day again and pain in the chest came back.
Eventually got to my current neurologist and the same story except she tried methotrexate 10 tablets once a week. We had tried prednisone as well, which of course helped, but I got major problems and we had to stop.
I was on methotrexate for a year with one crises after the other using IVIG to help. My neurologist and I jointly decide we needed to be more aggressive in my treatment and because cyclophosphamide worked the last time I am now having this treatment again, once a month for 4 months had one so far 21 of February is my next on. Of course the risks are very high with this treatment including bladder cancer and hair lose, susceptibility to infection etc. but the alternative for me would be death.
This debilitating disease has taken so much from me in one way or another. It steals your independence, self worth and … I could go on and on. Even now I still have to tell my family what I can and can’t do because our condition varies from day to day.
I refuse to give up hope and I will fight so that I can paint again. I am a born artist and live to paint.
Thank you for taking the time to read my story and please spread the word about Myasthenia Gravis.”
“Peace be with you all”, Theresa, SOUTH AFRICA
15 February, 2013 at 15:03

Rashmi Rungta wrote:
“I am currently 43, been in a corporate career for close to 16 years, currently working in London as a Management Consultant and also a recent graduate of London Business School.
I got affected with CMG when I was just 6 months old and my family had no clue what was happening (I turned blue and took a fall and thereafter would pant on trying to drink milk, stopped growing, could not walk or crawl properly and eyes drooped down so much that I used one hand to lift my right eye to play with toys) as medical technology was not as advanced in India as it is today. They ran from pillar to post trying to figure out; tried all sorts of remedies from traditional to allopathy to homoeopathy and finally it was diagnosed. I had cretinism, CMG and hypothyroidism. Doctors visiting from US asked my parents to bring me to the US for treatment and my family spent a fortune in the same. I had a thymectomy in UCLA when I was 7 yrs. I was also a research patient in NIH Bethesda as my case was extremely rare – the only respite here was that as a research patient we did not pay the enormous medical cost. The treatments did help me carry on normal life – general weakness remained but not much of slurring and double vision. My disease was in remission thereafter with stray incidents on and off.
It was a challenge to attend school and college in India as firstly it is not a disabled-friendly country (too many / high stairs to climb, uneven footpaths etc.) at all and secondly no one understood why my eyes were so droopy and uneven (I lost vision in my left eye with the exception of peripheral vision) , could not run / walk fast enough as other kids/adults, took time in eating and why my family was so protective all the time. Nevertheless despite stares and being jeered at, I learned to live and accept how it was.
I have been independent for more than 10 years, lived / travelled and worked across the world, managing on my own. It has never been easy as it is an invisible and an unknown disease. I had to be aware of my limitations and at times push myself beyond them as felt that its important to move on.
I had a relapse about 3 years back which scared me to hell as I could not imagine becoming dependent again. My speech started slurring, hands and legs almost froze, could not move my hands up and hold anything for too long etc. I went back to my US doc and am on medication since then. I refused to take steroids despite insistence from the doc – relied on Mestinon initially and then gradually stopped once the Azathioprine started showing its effect.
Life has been like a battlefield but then I guess we would not realise the importance of what we achieve too if it were too easy – though I sometimes do wish it were a wee bit easier :) .
I do hope that I can leave my mark in the business world and the society and also help / motivate others to fight against the odds.”
Rashmi Rungta, LONDON, England
15 February, 2013 at 16:33

Barbara Peggs says:
“At some point I also hope to share my journey about MG on a blog. I’ve read all those posted and relate to most all. However, while I relate to many, and share the same experience with some, I have the unusual situation of my strength increasing as the day progresses. The heaviness of limbs, fatigue, etc. is greatest when I awaken, gradually easing, then towards late eve. I feel at my best.”
“While I often feel so tired, I’d just like to find someplace and lie down, the worst feeling of all is the lack of understanding, lack of empathy, lack of emotional support,etc. from my family and friends. They see me as “looking” healthy, so they can easily assume there couldn’t be that much wrong, or if there is, it can’t be that serious. The mindset of people (including many members of my family) who think like this can’t be changed, until there is greater Public Awareness regarding MG. It doesn’t matter what happens, their view is set (at least in my experience). I’ve had an MG crisis, sat in a hospital for 6-8 hours having IVIG infusions, blood exchanges, developed liver and kidney damage from treatments, and now need treatment for those as well. Side effects have created more issues. Even had a form of skin cancer that took root and was surgically removed before it attacked a vital organ, surgery on my vocal cords hoping to strengthen my voice (at times can barely speak above a whisper; other times no voice at all). Not to mention the numerous times I’ve been hospitalized as a direct result of an injury from falls due to the fatigue MG causes. I could go on and on. Still in spite of all this, I live alone. When family or friends stop by, because I don’t seek pity, only understanding, I make an effort to look as well as possible. I refuse to be identified by MG. I do my best to stay positive and not complain, yet everyone resorts to the same mindset. Their opening remarks are always “I was sorry to learn you’ve been in the hospital again. You look great! I am so happy you are back home and doing so well.” Not one is ever interested in reading the literature I’ve handed out or asks me “just what is MG?” Others say they read a bit on the Internet. We all know that info on the Internet gives a summary, it does not give the real story, which is one of no two people feeling the same, nor does it tell how it still kills. I get so sick of reading “a person with MG can expect to live a fairly normal life.” If my life for 12 years has been anywhere close to what I once considered “normal” I must never have known what “normal” is. Thank God I have one son who took time to educate himself about MG. Also,two friends. If not for them, I have no doubt I’d have gone for days without being able to eat. I would be so fatigued, I could not pull myself up to get out of bed, much less stand long enough to fix a bite to eat. God bless you Carole for this site. It always helps to know we aren’t in the boat all by ourselves. I am praying you and Jessica have great success in your efforts to gain Public Awareness for Myasthenia Gravis. Hopefully with all you do, now Jessica, I may live long enough to see MG wiped out. I’m certain anyone who posted their stories, about their journey with MG, would agree with me. We wouldn’t want anyone else to have to know what it’s like on a daily basis, and the many challenges and struggles we face. I so hope we can find a cure or at least get quicker diagnosis and better treatment. God bless you!
15 February, 2013 at 19:44

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4 Responses to Patient’s stories

  1. Melissa Lynn says:

    Thanks so much for sharing Miriam. As an MG patient, I can not begin to express how much the love, support and sacrifices of our caregivers and families mean to us. The disease has a profound impact on the entire family. So happy to hear Kendal is starting to get relief. I pray that she will continue to improve every day and truly heal in every way.

  2. Pingback: Back home in Provincetown, Cape Cod | Vehicles Working for Causes
  3. Theresa Krohn nee Sparrow says:

    I was diagnosed in 1988 at the age of 31 it was very difficult to get a diagnoses. I was a very active athletic young mother of 2 sons. I initially presented with severe headaches and extreme fatigue, pain in my chest and blurry vision. Of course I got weaker and weaker ended up in hospital numerous times and resting in hospital on vitamin infused drips would improve my symptoms.
    My youngest son was born with an extra chromosome on 22 which is very rare. Some of the challenges I faced with him was tube feeding “he had a horse shoe cleft palate” no sucking reflex etc. He also had a constricted or stenosis of the rectum. I won’t go into details but it was very hard going physically and emotionally. My symptoms started when he was about 18 months old and I lost my mother when he was a month old, so everyone including my GP thought I was just exhausted. When my symptom’s became too severe to ignore, another GP who I had consulted started doing research on his own. At the time we lived in a very small harbour town miles away from any medical facilities. Eventually this GP realised I had MG and sent me to a neurologist 2 hours drive away he confirmed the diagnosis with a tensilon test. In those days, especially in South Africa, medical tests for MG were not available. My blood was eventually sent to the UK for antibody testing only about 3 years later it came back positive and the ct scan showed my thymus gland was enlarged. The MG went on to progress very rapidly and I was completely debilitated. I was given massive doses of prednisone and when I stabilised a bit they did a thymectomy. I did well for a year after thymectomy, then suddenly my symptoms returned and I went down hill very fast: breathing unaided was not possible, went into crises, put me back on high doses of prednisone. Again nothing helped, IVIG was not available in those days and plasmapheresis was impossible I lived too far from a renal unit.
    My neurologist at the time started with cyclophosphamide infusion. Slowly but surely I started to improve very slowly after the 3 cyclophosphamide infusion my neurologist cut back on my prednisone and mestinon. Eventually I went in to remission and was symptom-free for about 6 years, only getting medication-induced symptoms.

    I almost forgot I had MG. I had started a car rental franchise and was running half marathons. Then one day while I was painting, I tried to text a friend and was shaking so badly I could not. I started sleeping 18 hours a day again and pain in the chest came back.
    Eventually got to my current neurologist and the same story except she tried methotrexate 10 tablets once a week. We had tried prednisone as well, which of course helped, but I got major problems and we had to stop.

    I was on methotrexate for a year with one crises after the other using IVIG to help. My neurologist and I jointly decide we needed to be more aggressive in my treatment and because cyclophosphamide worked the last time I am now having this treatment again, once a month for 4 months had one so far 21 of February is my next on. Of course the risks are very high with this treatment including bladder cancer and hair lose, susceptibility to infection etc. but the alternative for me would be death.

    This debilitating disease has taken so much from me in one way or another. It steals your independence, self worth and … I could go on and on. Even now I still have to tell my family what I can and can’t do because our condition varies from day to day.

    I refuse to give up hope and I will fight so that I can paint again. I am a born artist and live to paint.
    Thank you for taking the time to read my story and please spread the word about Myasthenia Gravis.
    Peace be with you all
    Theresa

  4. Barbara Peggs says:

    At some point I also hope to share my journey about MG on a blog. I’ve read all those posted and relate to most all. However, while I relate to many, and share the same experience with some, I have the unusual situation of my strength increasing as the day progresses. The heaviness of limbs, fatigue, etc. is greatest when I awaken, gradually easing, then towards late eve. I feel at my best.
    While I often feel so tired, I’d just like to find someplace and lie down, the worst feeling of all is the lack of understanding, lack of empathy, lack of emotional support,etc. from my family and friends. They see me as “looking” healthy, so they can easily assume there couldn’t be that much wrong, or if there is, it can’t be that serious. The mindset of people (including many members of my family) who think like this can’t be changed, until there is greater Public Awareness regarding MG. It doesn’t matter what happens, their view is set (at least in my experience). I’ve had an MG crisis, sat in a hospital for 6-8 hours having IVIG infusions, blood exchanges, developed liver and kidney damage from treatments, and now need treatment for those as well. Side effects have created more issues. Even had a form of skin cancer that took root and was surgically removed before it attacked a vital organ, surgery on my vocal cords hoping to strengthen my voice (at times can barely speak above a whisper; other times no voice at all). Not to mention the numerous times I’ve been hospitalized as a direct result of an injury from falls due to the fatigue MG causes. I could go on and on. Still in spite of all this, I live alone. When family or friends stop by, because I don’t seek pity, only understanding, I make an effort to look as well as possible. I refuse to be identified by MG. I do my best to stay positive and not complain, yet everyone resorts to the same mindset. Their opening remarks are always “I was sorry to learn you’ve been in the hospital again. You look great! I am so happy you are back home and doing so well.” Not one is ever interested in reading the literature I’ve handed out or asks me “just what is MG?” Others say they read a bit on the Internet. We all know that info on the Internet gives a summary, it does not give the real story, which is one of no two people feeling the same, nor does it tell how it still kills. I get so sick of reading “a person with MG can expect to live a fairly normal life.” If my life for 12 years has been anywhere close to what I once considered “normal” I must never have known what “normal” is. Thank God I have one son who took time to educate himself about MG. Also,two friends. If not for them, I have no doubt I’d have gone for days without being able to eat. I would be so fatigued, I could not pull myself up to get out of bed, much less stand long enough to fix a bite to eat. God bless you Carole for this site. It always helps to know we aren’t in the boat all by ourselves. I am praying you and Jessica have great success in your efforts to gain Public Awareness for Myasthenia Gravis. Hopefully with all you do, now Jessica, I may live long enough to see MG wiped out. I’m certain anyone who posted their stories, about their journey with MG, would agree with me. We wouldn’t want anyone else to have to know what it’s like on a daily basis, and the many challenges and struggles we face. I so hope we can find a cure or at least get quicker diagnosis and better treatment. God bless you!

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