What to expect from MG
Hi everyone, I’m a 19 year old female and i’ve accidentally got diagnosed with MG, I got sent for a CT scan with contrast for my seizures and then found out I have mg. I’ve noticed some symptoms like how hard it is to swallow when i eat, i just thought it was due to my fear of choking, but i haven’t had the experience of the drooping face, i get the weakness mainly in my legs and around my jaw but i don’t know whether im in early stages or anything. i’m just very confused because all of it. If anyone can help me understand about the stages.
Also I was also diagnosed the exact same way as you. I had a very bad upper respiratory and was given a Ct scan for pneumonia. I ultimately did not remove my thymus and I have a very mild case for 7 years now. I have absolutely no plans to remove it either .
I find it puzzling that doctors can somehow convince us patients that the way they take out the thymus can make a difference in the result. Just think about it . Whether you remove another body part by open body or keyhole surgery will it make a difference? I think not, People need to start questioning the accuracy of that because the real reason could be many aren't trained to do robotic and not that the robotic is not as good.
I also think it definitely depends on the doctor's confidence or experience with the robotic version! These options can depend on the location where people are located. In my experience and that of many others, the doctors who favor the transsternal version are because it is easier for them to ensure that every bit of the thymus and residual thymus tissue is entirely removed, which they believe affects the outcome of surgery. The patient's lifestyle also plays a significant role in deciding between the two options because only some are in the position to have months of recovery versus weeks.
Jodi, Team Member
Hi yes i do, they said i have a hypertrophic thymus, have no clue what that means, but i’m still waiting on the appt, they’ve referred me to general surgery.
okay, i was confused about the hypertrophic thymus cus i couldn’t find anything under that. i’ve done quite a bit of research about thysectomys, but just wanted to know if it gets rid of mg completely after it? i was working as an entertainer but currently off because of my seizures but don’t know whether i can go back for next seizures due to mg. I’ve only had today the eye drooping and face paralysis, i’ve had it twice both lasting about half an hour. I also have the throat closing up and jelly legs. I haven’t been seen i’ve literally just been given a letter and that’s it, i’m waiting for a call. For some, they never experience another symptom or flare again after the thymectomy surgery. Many people report around a decade of symptom remission before symptoms return. Robotic surgery is newer, so it is hard to average out an estimate of the long-term success of surgery, symptom remission or return, because there are not enough reports to compare to the number who had the transsternal approach. However, many who do have symptoms return have them do so on a much lesser and more manageable scale than previous to their surgery. Much research remains to be done on the link between the thymus and MG. This article dives into the pros and cons of each surgery: https://myasthenia-gravis.com/clinical/thymectomy-pros-cons.
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Thankfully, your symptoms do not sound too severe at the moment. The throat closing is concerning. Just stay mindful of any changes to your breathing. Here is an article that lets you know of symptoms that should warrant you to head to the emergency room just in case: https://myasthenia-gravis.com/living/emergency-room-decision. Hopefully, you get a call for a referral soon. If not, don't hesitate to call your doctor's office until you do. Surgery, as you have probably read, is ideal around a year after initial symptoms, so it is good to get treatment started to get symptoms under control as soon as possible, as it can take time for treatment to take effect.
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Let us know if you have any more questions or concerns 😀
Jodi, Team Member
Hey! Welcome to our fantastic community. My deepest sympathies about your recent diagnosis. I hope you are coping okay with this news. MG treatment has made tremendous advances lately, so stay hopeful about your condition.
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Did they note an enlarged thymus gland or thymoma during your CT scan? Have they ordered blood work to check for MG antibodies?
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Here are some articles about swallowing and choking with MG: https://myasthenia-gravis.com/living/swallowing-speaking-symptoms, https://myasthenia-gravis.com/clinical/barium-swallow-study, https://myasthenia-gravis.com/living/swallowing-safety. Everyone is affected by MG symptoms differently. It is a very individualized disease. Here is an article that breaks down symptom severity: https://myasthenia-gravis.com/symptoms.Jodi, Team Member
