Patient Comments: Myasthenia Gravis - Symptoms

Question:

What symptoms did you experience with myasthenia gravis? Submit Your Comment

Comment from: FightforJoy, 45-54 Male (Patient) Published: October 12

I began having right eyelid drooping a few years ago. It was first noticed by my Air Force optometrist in Alaska in 2012. My primary care physician there thought it was probably nothing. I arrived in Florida in 2014 and within two months began experiencing tingling in my arms. I saw a neurologist who diagnosed me with small fiber neuropathy. A local neurologist began to expect multiple sclerosis (MS) as a possibility and after nearly two years, several tests, multiple MRIs, and not having a definitive diagnosis on the MS I began seeing a new neurologist who said my symptoms were not suggestive of MS but seemed more consistent with myasthenia gravis (MG). He went ahead and started me on Mestinon, and if I understood him correctly, he said if I didn't have any of the Mestinon side effect then I probably have MG. Well, so far, no side effects. I think he plans to send me for a definitive diagnosis. All I know is I'm tired all the time. My lips twitch when I try to smile. I sometimes have trouble swallowing liquids, although I almost choked while swallowing solids today. But I have gotten pretty adept at feeling my swallowing headed for a choking spell and can sometimes stop the swallow. I have trouble lifting my right leg sometimes and it will catch when I am getting into my vehicle, for example. I'll think it is high enough but then it will catch on the side of the vehicle as I'm getting in. Even sitting for long periods of time will make my legs feel tired. I have also had double vision, usually upon waking up but have also had it when awake. It is sometimes blurry. My eyes feel tired a lot. It's hard to explain but in addition to feeling tired they feel like they are ready to pop out of my head. Regarding the neuropathy, the new neurologist said it is not unusual for someone with MG to have other autoimmune diseases. While I was seeing the first neurologist he started me on Depakote for possible seizures. I gained a lot of weight and developed type 2 diabetes. So he took me off that and I lost all the weight but so far still have the diabetes which it has been suggested is considered autoimmune as well. The Depakote also damaged my already diseased liver so the new neurologist doesn't want to start me on prednisone for fear it will cause weight gain.

Comment from: labrador, 35-44 Female (Patient) Published: September 06

I have been living with myasthenia gravis for 21 years. I struggle with double vision, pain around the lower back and hips with tingling sensation in the lower legs and feet and pain in my left shoulder. I use Mestinon and prednisone, and was on Imuran but developed liver problems. I am also diabetic.

Comment from: Kathy, 55-64 Female (Patient) Published: June 06

I started having trouble with swallowing in November of 2015. I was just diagnosed with oropharyngeal myasthenia gravis. My main trouble is trying to eat. I do a lot of choking and coughing on my food. I feel very fatigued all the time with zero energy. I was put on pyridostigmine and mycophenolate. I can't take prednisone because I am allergic to it. I have only been on the medicines a week now and I feel no change in eating. I hope to start feeling somewhat better and not so tired soon. This is very draining!

Comment from: arsalan khan, 55-64 Female (Caregiver) Published: May 24

I had this knee dislocation accident when I was going to drop my brother to his nearby coaching center. My bike slipped and I had this dislocation. For the moment I was not able to feel, but after I got back home, I couldn't move my knee, as it was too painful. I consulted my doctor and had it x-rayed. It showed a minor dislocation. The severe pain I was experiencing is gone but whenever I hit my knee to something, even when I put my knee on floor it hurts badly.

Comment from: ANGEL, 45-54 Female Published: May 09

With measles I had no rash, just a cough that was so bad it made my chest hurt every time I coughed. My body hurt at every touch, I had fever and stomach ache (around the diaphragm) that caused me to want to lie down and sleep. On top of that, my nose was clogged and congested, my eyes red, and I had no appetite. Water was my worst drink, I desired to eat fruits and sour things only, not a good experience.

Comment from: joyce, 65-74 Female (Patient) Published: July 31

I get a feeling as if I am going to pass out and worried that it is a symptom of myasthenia gravis.

Comment from: Chris, 55-64 Male (Patient) Published: October 04

I just found out today that my sodium levels are low. I take Celexa (antidepressant) and was told to not take it, by my doctor. I told her I needed this medication so she said to take 1/2 (20 mg instead of 40) and to also eat a can of soup a day. I am to go back in a week to have my sodium level checked again. Heart disease is rampant on my mother's side of the family. She will be 85 in a few weeks and had a quadruple bypass in 2013. She had 6 brothers and all had bypass surgery following heart attacks and the youngest brother is the only one alive. From reading about hyponatremia, heart disease is a factor and can be caused by my taking the Celexa. I know there are other factors but this frightened me enough to do what she says.

Comment from: Melinda, 55-64 Female (Patient) Published: December 02

I have myasthenia gravis. I started with 2 Mestinon 60 g daily and now I am on 8 tablets. I had eye drooping, my hands would not hold my bag, it just fell, my legs gave and I was falling in the street all over. My body is paining and I am very tired. The latest, my eye is paining. I don't know what to do or use, at times I feel like just closing it.

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Comment from: Kassebaum, (Patient) Published: August 28

I am a college educated lab technician. So I had a medical background. When one day I woke up with double vision I knew something was wrong. Then my eyes were involved, the eyelids, then voice and then all my skeletal muscles until I was virtually paralyzed by myasthenia gravis.

Comment from: David, 65-74 Male (Patient) Published: August 11

I was diagnosed with myasthenia gravis in June of 2014. Mestinon did not work. I am mainly on prednisone and Imuran. I have an IVIG every month. I still have much fatigue and leg weakness. I am also short of breath. I think next will be the plasma exchange. I think that the vision is also getting worse.

Comment from: 19-24 Male (Patient) Published: June 24

I am 20 years of age. I haven't yet been diagnosed with myasthenia gravis but just recently I went to an eye doctor after waiting 3 months for an appointment and they believe I have it. I have an appointment soon with a neurologist. I'm so worried because my goal was to get into the military but ever since I've had these symptoms I don't know what I'm doing with myself anymore. These symptoms have been going on for almost 2 years now. I get really bad migraines every day. I get a very bad droopy eye lid, shortness of breath, eye pain, and last but not least I'm always so exhausted especially because I work in 80 to 105 degree weather 8 to 10 hours a day 6 days a week. I used to be so athletic and now I just can't; when I run hard my head and eye bug me! Really wish there was a cure for this, it's making me hate life.

Comment from: Ray P, 45-54 Male (Patient) Published: June 09

I was just diagnosed with myasthenia gravis (MG) after four years of thinking I had mitochondrial myopathy. When my eyelid began to droop and I grew tired from eating and talking, my primary care doctor said I have myasthenia gravis and started me on a treatment for it. I had tested negative for MG previously. It's been a few days now, and I can walk to the end of the street and back without braces. I feel hopeful again. I believe that I will be able to walk without my braces more and more. I haven't experienced any further fatigue from chewing or talking, and my eyelid isn't covering a quarter of my eye! So, I hope this offers someone else hope that things can get better.

Comment from: Guitarman, 55-64 Male (Patient) Published: March 02

My neurologist is currently testing me for myasthenia gravis (MG). I started having symptoms about 2 years ago. I would fall down and could hardly get back up. I wake in the morning absolutely fatigued and feeling bad. I experience nerve pain continuously and am having breathing difficulty and swallowing difficulty. I sometimes choke on my food and drink and cough until I feel I am going to faint. I will awaken at night and can't get my breath and thus have a panic attack. My CPK is very elevated (440) and my urine is dark. My doctor had given me prednisone but it didn't really help. I am now taking ropinirole and gabapentin while awaiting further testing, but still am very fatigued and painful and still having trouble swallowing and breathing. Also, I can hardly climb stairs and walk for very long.

Comment from: sudie, 75 or over Female (Caregiver) Published: February 17

My husband was diagnosed with myasthenia gravis (MG) little over a year ago. It started out with double vision, and an ophthalmologist said he had 3rd nerve palsy and fitted him with lenses to solve the problem. Then he had speech slurring and weakness and thinking it was a TIA (transient ischemic attack) I took him to the emergency room (ER) where he stayed for a couple of days. A neurologist diagnosed the MG and started him on Mestinon. Immediately after taking the first dose his double vision ceased. He was also put on prednisone. He still gets tired more easily, but we're thankful it's not more serious. He is 80 years old but his energy level has always been real good, so it is good to know that this treatment has been successful.

Comment from: Marcie, 45-54 Female (Patient) Published: June 24

My first symptom of myasthenia gravis was double vision in my left eye. I have difficulty moving my eyes from side to side. I feel a pull in the eye muscles. I have dizziness, lightheadedness and it's sometimes difficult to focus on a task. I also have fatigue and at times it is extreme along with muscle weakness.

Comment from: Bev, 65-74 Female (Patient) Published: April 17

I have only been diagnosed with myasthenia gravis for 3 1/2 years beginning with the eye then moving down to muscles and extreme fatigue. My doctor started me on Mestinon 60x4 a day. I did not get relief nor did my eye open. She then began the prednisone with the Mestinon and I was a little better until I went into myasthenia crisis. After a week in the hospital and 5 plasmapheresis treatments and another medication (Imuran) I am currently holding my own but am still very fatigued. I try to follow doctor"s orders and rest daily at least once before I get to the point of collapse. That seems to help.

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Comment from: Bmg, 55-64 Female (Patient) Published: March 20

It is just confirmed that I have myasthenia gravis (MG). It started with a drooping right eye lid. I have also been extremely tired. But in hind sight I likely have had it for a while. I have had some pain in my left arm for a couple of months prior to the drooping eyelid! I am now on Mestinon and am dealing with the side effects! I think the vision problems and the fatigue are the hardest to deal with. I realized that I can"t do a lot and expect to have energy for the next day! So I have to pace myself. For now I pick and choose what work will get done and from now on I will do next to nothing on Saturday so I can have the energy for church on Sunday. Considering I am a minister, this is important!

Comment from: Bigdogmd, 55-64 Female (Patient) Published: February 04

I was diagnosed 3 months ago from droopy eye and breathing issues. However I am an asthmatic when we have extreme weather changes, etc. I am on prednisone and Mestinon. Saturday morning at 4 a.m. I had an acute attack myasthenia gravis in my legs, especially my left leg. I have had fusion of 4 lumbar discs but this was out of the blue. I could not walk and was in acute pain in my legs. More my left then right. After 120 mg of prednisone and Mestinon plus a muscle relaxer I began to settle down hours later.

Comment from: Smocker, 65-74 Female (Patient) Published: January 02

With myasthenia gravis I experience vertical double vision, shortness of breath, muscle contractions in my left leg which cause me to fall and occasional trouble swallowing. With the leg contractions, I feel an electrical impulse that causes my leg to contract, without warning, and I fall. I recently had a lamination and fusion of L4 and 5.

Comment from: Mamab Aj, 45-54 Female (Patient) Published: October 15

I was diagnosed with MG (myasthenia gravis) in 2011. I was a teacher who all of a sudden could not walk. I had eyelids that closed, I could not lift my hands and I could not walk. I also have constant tingles in my head that run down my hands and then legs. I call it my MG sensation. Presently, I am doing all things after a lot of help. I am taking medications and monthly IVIG (Intravenous immunoglobulin).

Comment from: Dancingtj, 55-64 Male (Caregiver) Published: February 19

My father was diagnosed with myasthenia gravis when he was in his early 60s. He had the droopy eyelids, muscle weakness, etc. One day, he had trouble breathing and collapsed. The diagnosis was MG. They tried several different drugs and dosages for about five years. Then his neurologist told him about a treatment that works on about 50% of the patients called plasmapheresis. What it entailed was this: He spent 10 days in the hospital. Every other day he was hooked up to what was similar to a dialysis machine. He would have a needle in each arm, one taking blood out that was then filtered through a machine, plasma removed, then mixed with donated plasma and a citrus substance, then reintroduced back into the body through the other arm. This process took approximately four hours each time and could only be done every other day. He had five treatments in 10 days. When my dad went into the hospital, he was wheelchair bound, only able to walk a few steps at a time, but after the treatments were finished 10 days later, he walked out of the hospital on his own two legs and was never wheelchair bound again. Unfortunately four years later he passed away from colon issues, but the treatment worked for him. I hope this information is helpful to other people.

Comment from: A Stephenson, 25-34 Male (Patient) Published: July 30

I have had myasthenia gravis since 2003. I got medically discharged out of the Army, a job I loved well. My heart had 5 myasthenic crises, 3 being severe enough to be ventilated or require CPAP (continuous positive airway pressure) helmet. I have had countless plasma exchanges as my veins are bad. I also needed Hickman lines inserted. I have been on azathioprine, mycophenolate (CellCept), methotrexate and none have worked. I'm currently on leflunomide. To say it's took its toll on my life is a massive understatement but you can't let it get to you. Keep fighting, one day it will get a medication that takes the symptoms away. Don't give up!

Comment from: jcaptaink, 45-54 Male (Patient) Published: July 28

I have not been given an 'official' diagnosis myasthenia gravis. Symptomology exists. Treatment with Mestinon helps the double vision. Unfortunately, when you don't know, it is hard to respond. The pain, weakness, fatigue are all so frustrating. The heat seems to increase the problems. I cannot function as my heart desires. No matter how I try to convince myself to adapt to the needs of the situation, my mind still wants to respond as though nothing was wrong. Every day, at the end of the day, I find that this is a mistake. You would think I would learn the lesson. The only solace that I seem to find is that I am not alone. To hear the struggles of others and their frustrations that match mine at least allows me to remain sane.

Comment from: ronda, 65-74 Female (Caregiver) Published: May 30

My mother was diagnosed with myasthenia gravis at the age of 73. It has progressed from ocular to general. She is so weak. She has been hospitalized 3 times and almost died from infection from a bug bite. She has a pain all the time. I work so I have gotten home health but it doesnt seem to be enough.

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Comment from: linzi, 45-54 Female (Patient) Published: March 04

I was diagnosed with myasthenia gravis in 1996 thanks to a very good general physician who noticed my eyelids even though I went to him with one of the children and not for myself. Now in 2014 I'm struggling. I try every day and tell myself not to be lazy and get on with it. But it is hard to keep going. I'm tired all the time from the minute I open my eyes in the morning. I'm exhausted all the time. I just want to lie down and sleep. I've pushed myself so hard over the years even my husband doesn't understand how hard it is. I just want to do normal things and feel normal, that's all.

Comment from: Caresa, 35-44 Female (Patient) Published: June 01

I have been diagnosed with MG since 1991 after the birth of my daughter. My symptoms included but not limit to drooped eyelids, slurred speech and severe fatigue. It took doctor months to finally diagnose the problem. MY symptoms started as early as 1985 with the fatigue. I had the Thymectomy surgery in 1991. It helped but not a cure as hopeing. I started out taking 180mg timespan daily to taking 60mg mestinon twice daily. The Dr's have tried suggesting other meds but I have only taken the mentinon. Some days I may have to adjust my dosage due to extra activity. I still feel fatigue most days but the double vision and speech only happens every now and then. Overall I life a normal lifestyle. I have been on my job in retail management for 20+ years and has never missed time off due to MG, a blessing.

Comment from: Peggy62, 55-64 Female (Patient) Published: May 14

I was diagnosed w/ MG in 2005 after both of my eyelids were dropping. I also have trouble swallowing, chewing, walking and holding on to things. But it was my eyes that sent me to an eye doctor, who while they found nothing wrong with my eyes suggested that I get tested for MG. I have never gone into remission. I have been on both prednisone and Mestinon since I was diagnosed. While both of these help with most of the symptoms, they do nothing for the fatigue and they both upset my stomach. I have also had 2 courses of IVIG but that only helped for a couple of weeks. So I guess we just have to try and cope and "take it easy" as my doctor says.

Comment from: Robert, 75 or over Male (Patient) Published: April 04

I have had MG for about 10 years. First diagnosed with a dropped eyelid. Later with speech slurring. Was able to get it in remission by taking large doses of Prednisone for about 6 months. Starting with 60 mg daily for 6 weeks, decreasing to 50 mg for six weeks, etc. until I got down to 10 mg daily. I take 10 mg daily as maintenance. I had relapse in 2006 due to my negligence of doing physical hard and hot work restoring hardwood floors in a rental house I own. Speech problems reoccurred with difficulty in swallowing and some muscle weakness. I was able to get it back in remission by same treatment as previously. In 2011 it reoccurred again basically for the same reason of working and cutting several yards in hot sun and my body getting totally exhausted. Have been going through the same treatment as previously. I am now down to 10 mb. But I am having harder time getting it into remission. I am still having some problems with my speech which has always been my major problem. Never have had many problems with muscles. Do have problems going up lots of steps. My MD says I have been blessed with such a mild case of MG. I thank God every night for my blessings. I know some people really have it bad. I live a normal life and take Mestinon as needed for speech. Most time one pill a day will suffice for speech problems.

Comment from: tammy, 35-44 Female (Patient) Published: March 30

I feel like I'm so sick every day. When I have some energy I try to do normal activity like cleaning house, but then it just takes so much energy I get so tired I can feel my eyes to start to drop and my muscles get so very tired I can't even work anymore. I just don't feel normal any more. I can't wait to get the right kind of help.

Comment from: seafood 4, 35-44 Female (Patient) Published: August 09

I was diagnosed in 2010 with myasthenia gravis. First the doctors thought it was a stroke in 2007. I had all the signs and symptoms. Then after a while I started having a lot of tingles on all parts of my body. When I would drive, my eyes would just slowly close up. I had a tired feeling that was just unreal. Fortunately, the medications are really helping me a great deal. I must say, I have an awesome medical team of doctors and nurses.

Comment from: gasol, 45-54 Female Published: March 22

When I was first diagnosed with myasthenia gravis, I had double vision in my left eye. Five years later, I still have vision problems, mainly blurred vision. Sometimes I cannot focus on something. I feel that I have more pain in my arms than weakness. I take my medication every day, but lately, my vision seems to be getting worse.

Comment from: mack, 45-54 Female (Patient) Published: November 11

I have had bloating, pain in stomach, and pain between shoulder blades since May. I have had all the required tests and a small hiatal hernia was found. I was assured it would never give me problems. Well, I still have the same symptoms I did in May and can't find out why. I burn in abdomen, have chills and sometimes shortness of breath. I have been to several doctors and still no relief. This is no way for anyone to have to live!

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Comment from: cruznwithchrist, 65-74 Male (Patient) Published: December 05

My husband has had myasthenia gravis since 2007. He was given the blood transfusions and was on the top dosage of Mestinon and was not doing any better. His is mostly confined to the throat area.

Comment from: aida, 55-64 Female (Patient) Published: August 20

I was just diagnosed with MG. In addition to all the typical symptoms, I am always tired and weak.

Comment from: Annerie, 55-64 Female (Patient) Published: August 01

My first symptom was double vision.I would have to hold my hand over my left eye to see clearly. Got diagnosed when my doctor noticed my right eye drooping. I had been experiencing unrelenting fatigue for more than a year prior to these developments. I have been prescribed Mestinon but after reading all the side affects I'm nervous about taking it. But lately it's been harder and harder to breathe (I'm asthmatic). As I am a jeweler and need my eyes I wonder about my future prognosis. Will start the Mestonin today.

Comment from: police girl, 35-44 Female (Patient) Published: May 02

I was diagnosed with MG on September 11, 2001. I had the worst case of it. I use to be a firefighter and a police officer. I really didn't know when I was falling down at work what it actually was. I have had all the medications, a thymectomy, and treatments that you could do for myasenthia. The only thing that is working for me right now is the prednisone and plasma exchange every month. But the treatments are not lasting an entire four weeks. I have bad days, but I refuse to let myasenthia beat me. It might have taken away my ability to be a police officer – something I love – but I will continue to fight. Don't give up: we are going to beat myasenthia gravis.

Comment from: Norene, 55-64 Female (Patient) Published: April 15

I'm in the process of testing to diagnose my condition, but I was put on one of the medications used for MG. After reading about MG, it all makes sense. The symptoms sound just like what I have been going through – droopy eyelid, double vision, unsteady gait, and fatigue. However, I also have dizziness. I have been out of work for almost two months now, going from doctor to doctor, test to test. I hope I soon have at least a firm diagnosis and treatment.

Comment from: Hartley, 65-74 Male (Patient) Published: February 19

September 2012 I was diagnosed with mysasthenia gravis after having developed a drooping left eyelid and double vision. I was put on pyridostigmine 60mg. I am now on 5 tablets per day and my symptoms have gone. However 10 days ago I had some dental work done under injected local anesthetic. Immediately following the treatment I developed slurred speech, excess saliva and some difficulty swallowing. My consultant told me to keep on the same medication and that my symptoms should clear up in about two weeks.

Comment from: Suzy, 55-64 Female (Patient) Published: February 01

I was recently diagnosed after two hospitalizations for extreme fatigue, shortness of breath, hoarseness, double and blurred vision. I developed right eye droop in 2004. I have probably had undiagnosed myasthenia gravis for 5+ years. It's slowly improving after starting Mestinon. I take 60 mg every 3 hours and 1/2 sustained release tab at night. I'm also on provigil for fatigue. I am still hoarse and I feel like I have a band around my chest but my strength is much better. It's easier to climb stairs but I can't go out without a walker or wheelchair. It's been a huge lifestyle change. I was very active prior to this. I may get a scooter to walk dogs.

Comment from: wmhudson, 55-64 Male (Caregiver) Published: January 14

My husband was diagnosed with myasthenia gravis about 3 months ago. He is on methinone and 60 mg. of prednisone daily. He will get a little better and then have several really bad days. His main symptons are droopy eyelids, double vision, and fatigue. He is always saying his eyes feel funny, even if he is not experiencing double vision at that time.

Comment from: Sue, 35-44 Female (Patient) Published: November 06

I was diagnosed with myasthenia gravis in 2001.It started with me not being able to lift my left arm then a week later I couldn't lift my right arm. I was having blurred vision and having trouble going up and down stairs. I went into the hospital to have my Thymus Gland removed. After surgery I was fine for 5 years. I then started having trouble holding my head up and breathing problems. I was hospitalized to have Plasma Pheresis treatments. I then found out I had MG w/ Musk Disease. (Chronic Respiratory Problems) so I was put on a BI-PAP Machine which I am still on until this day. I've been in remission now for 3 years.I still take my medications (Prednisone, Mestinon, and Imuran).

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Comment from: no, 65-74 Female (Patient) Published: October 31

I was diagnosed in 1994 with myasthenia gravis. It affected all my body especially my breathing. I was in the hospital for 2.5 months on a vent then trach. I had every treatment; 6 iv/ig plasmaphereses massive doses of prednisone immune suppressants Mestinon a year ago. The doctor thought I was in remission and reduced my medications six months ago. I started having symptoms such as shortness of breath, eyes drooping. I was admitted to the hospital and given 5 iv/ig put back on same medications. I am not doing much better, still short of breath, and hardly any bladder control. I may have to have an iv/ig once a month until things improve. I am very discouraged and never thought I would be wearing a diaper. My breathing takes the fun out of everything. I have had heart and lung tests and everything is fine. I can't exercise so I am putting on a lot of weight. Luckily I have a great doctor and family. I've never had any pain, fatigue yes. Anyone that is not happy with their treatment keep pursuing it. You can have a fairly normal life before this set back. I was exercising in the pool two times a week. I sure hope I can get back there. Maybe my age is holding me back.

Comment from: Carrie, 65-74 Male (Caregiver) Published: September 25

My 72 year old brother was diagnosed with MG after having bronchitis in March of this year. It began with his not being able to swallow and change in speech. After a loss of 30 lbs in one month he finally went to the hospital. It took about a month for them to diagnose him. He was given a feeding tube and started on a pill every four hours. He had been doing a little better and two weeks ago they took out the feeding tube. He is now not able to eat very much again, has severe fatique, lost even more weight, and can barely walk or hold up his head. He was admitted to hospital yesterday and was told his disease is stage 3. Apparently, they are checking his heart and if it is strong enough they will start some sronge medicine via IV.

Comment from: Judi, 75 or over Male (Caregiver) Published: August 09

My father-in-law (who is 83) has myasthenia gravis and has been staying with us for about a month. He is so weak; he can't stand for more than a few seconds without holding on. He spends 90% of his waking hours sitting on the couch. I can't think that this is good for him. He told my husband that the doctors say if he exercises it will speed the progression of the disorder.

Comment from: CURVCIOUS, 35-44 Female (Patient) Published: April 05

My first sign of myasthernia gravis was that my left eye drooped. I had double vision, muscle weakness, a very unsteady gait, and fatigue. The ocular part has improved about 80 percent, but my neck and muscles weakness seem to have worsened.

Comment from: valynn, 35-44 Female (Patient) Published: June 14

I was diagnosed with myasthenia gravis after switching neurologists. My first neurologist said there was nothing wrong with me. I had serious fatigue. I had trouble going up stairs. I could barely lift my arms and could sleep all day if I let myself. Some days it was hard to hold up my head. I could barely wash my hair, face, or put in contacts. I have been on Mestonin, Predinsone for a year now. The Mestinon has helped with muscular symptoms, but I am still so tired and fatigued. It has been very depressing for me and hard on my family.

Comment from: hopeful, 55-64 Female (Caregiver) Published: November 28

My brother-in-law is in the hospital now, diagnosed with myasthenia gravis. He is at the ICU now and is connected to a ventilator. I would appreciate it much if anybody could suggest a specialist whom we can consult. I was happy many survived from the sickness. I thought there's no cure for this. Thank you for sharing.

Comment from: Paula, 45-54 Female (Patient) Published: June 24

I have been living with myasthenia gravis for about 10 years now. I was misdiagnosed for the first 5 years. I'm now on meds, but am still having problems. The muscle weakness and fatigue are horrible but the worse for me is facial drooping and severe vision problems that are interfering with my life drastically. Not to mention the meds are not too pleasant.

Comment from: caroline, 45-54 Female (Patient) Published: May 27

This is my second time round. I had a remission for about 10 years, however this time I have weakness in my torso and hips and legs mainly. Plenty of pain in both arms and shoulders and loser back. Sometimes I can hardly walk/ climb stairs etc. First time I had MG it affected my upper body, face neck and arms mainly.

Comment from: missyc, 45-54 Female (Patient) Published: May 03

I had thymectomy after incidental finding (CT Scan done because of uterus ca) of a rare tumor in my thymus gland. The biopsy was benign Thymolipoma with thymic cysts. Prior to thymectomy. I had brief spells of Left Arm Pain and numbness, felt like lumps in my throat with difficulty chewing especially meat. Along the years, I fell down for no apparent reason. One night, I woke up suddenly with a sudden sharp pain on my right eye, and I remember "forcing" my eyes to open slowly. Frightened, next day I went to see an eye doctor but he said my eyes were ok. Since I did not have any obvious symptoms of MG, the neurologist decided not to do the necessary tests post thymectomy. It's been 3 years now and I do feel fatigue occasionally but will be ok after rest. My left arm pain still exists, with neck and shoulder tiredness.

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Comment from: whitethunder44, 45-54 Female (Patient) Published: May 03

I haven't been diagnosed with Myasthenia, but I suffer with pain. I have left face numbness, left head pain, cervical and upper thorasic pain due to hardware in C4-6, rhomboid, hip joint, traps, upper leg, groin, pubic pain, waddling, right leg pain, (had two knee surgeries on right), left arm and shoulders pain, hands burn, chronic insomnia, sacrum bone sticks out and pinching on nerves, cannot sit, lie down or rest, onset was very fast after being diagnosed with fibromyalgia due to having seven surgeries within less than two years. The weather changes make symptoms worse.

Comment from: Cupcake, 35-44 Female (Patient) Published: March 29

I was finally diagnosed with myasthenia after 6 years of waiting. A neuroopthamologist, diagnosed and treated me with meds, including Prednisone. Now, after several years of treatment, I am in remission. I started out with double vision, being unbalanced, even falling down. Only a few times I was unable to move one leg, couldn't walk with either leg, or had an unbalanced gait (upper body rocking back and forth when trying to walk). I went into depression when I had to try and manage my normal life with the symptoms, especially when others didn't know they were even there. Especially my young children. I want you to have hope in knowing there's treatment for this disease!

Comment from: wendy, 35-44 Female (Patient) Published: March 05

I was diagnosed with myasthenia gravis when I was 18 years old and within a year I had my thymus gland removed. I rarely had any symptoms after my surgery. Now, almost 20 years later I am so tired it's unreal. I am wondering if this could be related to my myasthenia gravis. The feeling is so bad I barely have the energy to get up and go to work.

Comment from: Suzy, 55-64 Female (Patient) Published: August 03

I am experiencing fatigue. I cannot lift my body. It seems to be getting worse. I was diagnosed with myasthenia gravis just this June. I had 10 treatments in the hospital.

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