Patient Comments: Myasthenia Gravis - Symptoms

Question:What symptoms did you experience with myasthenia gravis?

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.

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.


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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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