Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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LadyLunar 03/24/2017

Hello, I am a 22 year old female, I smoked for 7 years and have a history of cancer on my fathers side.
I was admitted to the hospital in Jan of 2017, I passed out suddenly while walking out of the bathroom, a CT showed a mass on my thymus that is 6cm x 2.5cm, which in my files is annotated as thymoma but speculated to be thymic hyperplasia by the radiologist.
At the the time I was showing signs of chest pain, muscle weakness, back and chest pain, double vision and I was diagnosed with pericarditis and syncope on discharge but two weeks later I was admitted back in for passing out and all around body and muscle fatigue.
I'm currently waiting to schedule an appointment with a MG specialist in Bakersfield.

I had the EMG and CND done but both came back negative as well as the blood tests for MG, however I continue to experience extreme fatigue, double vision, muscle weakness, neck weakness, eye and face muscles twitching when I become emotionally aggravated, abnormal gait and all these symptoms vary from area to area and day to day. I have uneven pupils and respond extremely negatively to heat, to the point of heart palpitations and falling to the ground unable to move whilst muscle spasms that are not painful occur.

I do believe I have MG but the tests keep coming back negative however my doctor believes in the end it is going to be thymoma however refuses to diagnose MG because I experience large amounts of pain and keep being told it isnt a symptom and that's why he's so hesitant to diagnose.

I'm going insane because I strongly believe my symptoms match MG but so far the only real test that has come back positive was my antinuclear antibody test.

Any help or suggestions would be greatly appreciated.

LizzyG 03/24/2017

HI, wow, that sounds so frustrating. I'm so sorry for what you are going through. I really can empathize. A little about me: I am 44, and have had MG for almost 33 years now. I had surgery twice to take out my thymus but it has not helped. Even now, many years after my first surgery (the first was when I was 11yo, second when I was 15yo), doctors want to do a CT to see if there is more thymus. They think that left over thymus might be why I haven't been responsive to treatments even after all these years, and would explain an exceptionally high acetylcholine antibody level. So that is me...from what you tell me, I would try to get a second opinion. Do the doctors treating you have an expertise in MG? That could make a real difference. Most good MG doctors will tell you that MG is not a one diagnosis fits all disease. That is, everyone is different and therefore there is not one test to diagnose MG. The same goes for treatments. Your doctor needs to focus on making your care patient-centered, or what you need as an individual, because as I said, everyone has a different case. Do you have someone who can help you advocate? I never had this but it would have bee nice to. It's difficult dealing with doctors, because their ego's won't allow them to accept that they could be wrong, and their patient, right. A good neurologist is humble enough to listen to their patients. Most doctors who treat MG will inherently realize this after treating so many patients and realizing it's in the patients best interest to first consider what is going on with the patient, what he/she is saying, and to put aside what they learned in books. I've heard other MG patients say having a good neurologist is 80% of the battle. I wish I could give you more a better answer. Other than getting a second opinion, getting a neurologist who specializes in MG, I would say, trust your instincts. Tell them to take the thymus out. And then go from there. Thymus removal is much easier today then it was when I had surgery. Good luck! I really hope you get what you need so you can feel better. My prayers are with you. :)

LizzyG 03/24/2017

I'm sorry, it says you are waiting to see a MG specialist in Bakersfield...that is great! I have a feeling he will tell you what is going on. What I think is that you might not have MG per se, but symptoms of MG due to the thymoma. If that was the case, that would be good because it is relatively easy to treat thymoma but not so easy to treat MG. It sounds weird but I wish I had thymoma! Again, good luck and let me know what happens?

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