Brand New to the Diagnosis of gMG

By Rebecca Tucker

1 min read

For about three years now, I’ve been dealing with oxygen saturation dropping into the 70s and 60s, alongside a loss of muscle strength in my extremities. After pushing through a gauntlet of pulmonary, cardiac, and neurology workups, I finally have an answer: I am seronegative for antibodies but have generalized Myasthenia Gravis (MG). I’m still studying up on it, so I'm not entirely sure how to phrase that correctly yet! For context, I don't experience ptosis (drooping eyelids), but I do have a history of Crohn's/UC, complete with a "total colectomy diploma."

Joining the community

I'm really glad to be here and read through everyone's stories. It helps a lot to connect with others who understand.

Current treatment and side effects

I started taking pyridostigmine about a week ago. It is amazing how much it helps, but it has made my nighttime muscle spasms way worse, and I'm dealing with the diarrhea side effect as well. I asked my doctor if I could just take the tablets in the morning and afternoon, but the medication wears off in about four hours. I recently read about someone who takes half a tablet every three hours to keep their levels steady, so I plan to talk to my doctor about trying that approach.

Anyway, I'm glad to be here and look forward to learning from you all!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Myasthenia-Gravis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

CommunityMember8c3b20Member
 @ @
Rebecca TuckerMember
Thank you. It is very reassuring to hear your story. One of my major problems is diaphragm weakness and low saturation. (Sometimes down to 68%). I see pulmonology tomorrow.
WuwuMember
Welcome to the sight. I've had MG anti musk form for 19 plus years. Everyone is different. I do not have dropping eyes, but I do suffer from breathing spazumes, weak muscles, neck, arms, leg at times and torso. Every day I take mestinon, 120 mg every 3 hours, 3 times a day, if needed I can take more in the evening but I only do if we are out for the evening. I get infusions of Retuxin when I am out of remission, maybe every year to 3 years. I have found that if I over due my daily routine and think Im super woman, I dont stay in remission for more then a year. I can't have any of the new drugs that are offered because of the anti musk but the Retuxin works great . My breathing can be affected when Im walking talking and of course breathing at the same time ,lol. I slow down ,catch my breath and move on. After walking, I rest, for awhile before doing anything else, I also use oxygen at night when sleeping. Good luck on your journey. Don't try to do everything at once and slow it done to what works for you. You are your best advocate.
CommunityMemberd979aeMember
Hi Rebecca, I’m always glad to hear people’s “origin” stories regarding their diagnosis of MG. I too have generalized MG and am seronegative. My MG started long before I received my diagnosis in July, 2023. I ignored the significant weakening of muscle strength in my extremities for years until my left eye started its downward droop into ocular MG. I was initially diagnosed with Thyoid Eye Disorder due to my bulging eyes. Once I got the TED treated and under control my ptosis was more apparent. Luckily, my eye doctor suspected ocular MG all along and sent me to an experienced neurologist in Houston. All the blood work and tests actually showed seronegative generalized MG. I take Pyridostigomine as well. I’ve been on cellcept for flare ups but for the most part manage my MG symptoms with Pyridostigomine. I’m not good at taking the pills every 4 hours but when I do my MG symptoms are much less noticeable! I wish you good health and success in your MG journey.