Patient Comments: Myasthenia Gravis - Symptoms

Question:What symptoms did you experience with myasthenia gravis?

Comment from: FightforJoy, 45-54 Male (Patient) Published: October 12

I began having right eyelid drooping a few years ago. It was first noticed by my Air Force optometrist in Alaska in 2012. My primary care physician there thought it was probably nothing. I arrived in Florida in 2014 and within two months began experiencing tingling in my arms. I saw a neurologist who diagnosed me with small fiber neuropathy. A local neurologist began to expect multiple sclerosis (MS) as a possibility and after nearly two years, several tests, multiple MRIs, and not having a definitive diagnosis on the MS I began seeing a new neurologist who said my symptoms were not suggestive of MS but seemed more consistent with myasthenia gravis (MG). He went ahead and started me on Mestinon, and if I understood him correctly, he said if I didn't have any of the Mestinon side effect then I probably have MG. Well, so far, no side effects. I think he plans to send me for a definitive diagnosis. All I know is I'm tired all the time. My lips twitch when I try to smile. I sometimes have trouble swallowing liquids, although I almost choked while swallowing solids today. But I have gotten pretty adept at feeling my swallowing headed for a choking spell and can sometimes stop the swallow. I have trouble lifting my right leg sometimes and it will catch when I am getting into my vehicle, for example. I'll think it is high enough but then it will catch on the side of the vehicle as I'm getting in. Even sitting for long periods of time will make my legs feel tired. I have also had double vision, usually upon waking up but have also had it when awake. It is sometimes blurry. My eyes feel tired a lot. It's hard to explain but in addition to feeling tired they feel like they are ready to pop out of my head. Regarding the neuropathy, the new neurologist said it is not unusual for someone with MG to have other autoimmune diseases. While I was seeing the first neurologist he started me on Depakote for possible seizures. I gained a lot of weight and developed type 2 diabetes. So he took me off that and I lost all the weight but so far still have the diabetes which it has been suggested is considered autoimmune as well. The Depakote also damaged my already diseased liver so the new neurologist doesn't want to start me on prednisone for fear it will cause weight gain.

Comment from: labrador, 35-44 Female (Patient) Published: September 06

I have been living with myasthenia gravis for 21 years. I struggle with double vision, pain around the lower back and hips with tingling sensation in the lower legs and feet and pain in my left shoulder. I use Mestinon and prednisone, and was on Imuran but developed liver problems. I am also diabetic.

Comment from: Kathy, 55-64 Female (Patient) Published: June 06

I started having trouble with swallowing in November of 2015. I was just diagnosed with oropharyngeal myasthenia gravis. My main trouble is trying to eat. I do a lot of choking and coughing on my food. I feel very fatigued all the time with zero energy. I was put on pyridostigmine and mycophenolate. I can't take prednisone because I am allergic to it. I have only been on the medicines a week now and I feel no change in eating. I hope to start feeling somewhat better and not so tired soon. This is very draining!

Comment from: arsalan khan, 55-64 Female (Caregiver) Published: May 24

I had this knee dislocation accident when I was going to drop my brother to his nearby coaching center. My bike slipped and I had this dislocation. For the moment I was not able to feel, but after I got back home, I couldn't move my knee, as it was too painful. I consulted my doctor and had it x-rayed. It showed a minor dislocation. The severe pain I was experiencing is gone but whenever I hit my knee to something, even when I put my knee on floor it hurts badly.

Comment from: ANGEL, 45-54 Female Published: May 09

With measles I had no rash, just a cough that was so bad it made my chest hurt every time I coughed. My body hurt at every touch, I had fever and stomach ache (around the diaphragm) that caused me to want to lie down and sleep. On top of that, my nose was clogged and congested, my eyes red, and I had no appetite. Water was my worst drink, I desired to eat fruits and sour things only, not a good experience.

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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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