Patient Comments: Myasthenia Gravis - Symptoms

Question:What symptoms did you experience with myasthenia gravis?

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: DE DE, 45-54 Female Published: July 21

I have eye weakness, ptosis in one eye, muscle weakness in my limbs and hands, frozen eyeballs. I have been since put on medicine to control my symptoms. I'm waiting to see the full effect of the medicine.

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.

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Myasthenia Gravis - Treatment Question: What treatments have been effective for your myasthenia gravis?
Myasthenia Gravis - Diagnostic Tests Question: What tests were performed to diagnose your myasthenia gravis?

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