Patient Comments: Myasthenia Gravis - Symptoms

Question:What symptoms did you experience with myasthenia gravis?

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.

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.

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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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