Patient Comments: Myasthenia Gravis - Symptoms

Question:What symptoms did you experience with myasthenia gravis?

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.

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.

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.



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