Recent positive MG blood test
Hi, i received a letter from the hospital last night confirming that i had tested positive from a blood test for MG. I had been to the doctors after suffering with my right eye lid not opening after sleeping and a droop in it in the day. (started in Jan 2023)
I now dont have another appointment for 8 weeks and wandered what peoples experience had been and if i should push to get seen sooner / ie can symptoms develop and get worse over time if i dont get opto medication.
Has anyone else experienced just having it in one eye and it staying there? Been googling it all (i know i shouldnt) and now ive totally panicked myself.
I am a 35 year old female.
Thank you
I have generalized MG but my eye symptoms were made much better by wearing a weighted mask for sleep. I still do 2 years after discovering that. It is something easy to buy and can help even before you see more medical professionals, possibly. I hope you end up only having ocular MG and that you are helped quickly.
Thank you so much for the reply! sooo helpful.
So my letter says it was the acetylcholine receptor antibody test. they literally sent me a letter telling me i had a positive test without a call or explanation on any of it.
I have called up my insurance company and they have put me on a fast track for it so i should be able to be seen sooner will just have to travel further. I am really worrying and cant stop thinking about it now so decided an 8 week wait wasnt ideal.
Thanks again and any other advice or tips you think of would be great. xx
Hey! Do you know which antibody you tested positive for: (1)Acetylcholine receptor (AChR), (2)Muscle-specific tyrosine kinase (MuSK), (3) Low-density lipoprotein receptor-related protein 4 (LRP4)?
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MG is categorized as either ocular MG or generalized MG, https://myasthenia-gravis.com/ocular. Considering you are only experiencing weakness of the eyes, you would be labeled ocular MG. Sometimes MG only affects people with their eyes for years or their whole life. But, it can advance to generalized, affecting the entire body's muscles, often without warning.
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If you have not noticed any other weakness or trouble breathing, you should be good to wait eight weeks if you can tolerate the eye symptoms. If you are worried or anxious about the potential of worsened symptoms or want to stick to the safe bet, try and push that appointment forward or see if you can get in with another MG specialist sooner.
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You ideally want to begin on mestinon (pyridostigmine), https://myasthenia-gravis.com/treatment/ache-inhibitor, to help control your symptoms so that they do not worsen into generalized. But the main concern with MG is an MG crisis, which starts as immense weakening of multiple muscles and trouble speaking and seeing but can lead to respiratory failure if medical attention is not sought. So stay aware of your body and any new weakness you may notice. If this occurs, definitely push a sooner appointment, and go to the emergency room if you start noticing signs of an MG crisis, https://myasthenia-gravis.com/crisis
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Don't hesitate to reach out if you have further questions 😀 Here is a pdf with drugs that pose a risk to those with MG, http://nebula.wsimg.com/903ebe2c701eb4e72e3211dc9fb9064e?AccessKeyId=7F50FBE19A111D19DDAC&disposition=0&alloworigin=1. I would avoid anything labeled 3, 2, or 1, especially while you await that appointment.- Jodi, Team Member
