Patient Comments: Myasthenia Gravis - Symptoms

Question:What symptoms did you experience with myasthenia gravis?

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.

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: 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: 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.



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