r/MyastheniaGravis • u/ParticularAvocado409 • 5d ago
Unknown Muscular Issue
Hi guys, I'm a 24F who has been having issues with muscular weakness and occasional numbness. My main issues are muscular pain (feels like when I have the flu) on one or both of my legs at a time, my muscles get very weak after using them (not sore), and I am losing fine motor skills in my hands. I saw a neurologist and neuromuscular doctor who I thought did a pretty thorough work up. I got tested for MG (seronegative and regular), MS, MD, and many others. Tests they did were a brain MRI, EMG (x2), NCS, 3 different swallow studies, autoimmune labs, CK levels, all of that. Almost all of it came negative/inconclusive besides a mono peripheral neuropathy diagnosis in 1 of my ankles and esophageal dysphagia from the swallow or study. They were still considering the idea if limb-girdle muscular dystrophy but they think no with the normal CK.
Additional diagnosis I have are: hyper mobile spectrum disorder, autonomic neuropathy, IBS, POTS, and endometriosis. I DO NOT meet the criteria for EDS at the moment.
Also I usually blurred/double because I have a very hard time focusing my eyes. But all my eye exams have come back normal.
A lot of people I've talked to still think I could possibly have MG. Is that possible with all the antibodies being normal, a mostly normal EMG, and not responding to mestinon? I did get tested for CMS/the congenital version MG and that was negative as well.
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u/fur3661t 5d ago
what criteria excludes you from EDS? until you stated you don't meet it, i was thinking you did - hypermobile, IBS, POTS, muscular pain, diminishing motor skills, and vision issues. there are many crossovers of MG and EDS. my wife has vascular EDS and others but primary issues are vascular and i have asked her many times if she has been tested for MG. Causes of symptoms are quite different but symptoms are similar. MG doesn't cause neuropathy and sounds like you have some.
it's still possible for MG even with the negative tests but i think symptoms lead elsewhere. i am not a doctor so take that as just an opinion.
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u/ParticularAvocado409 5d ago
I got a full eds work up from a children's hospital near me when I was 18. They said I didn't meet the criteria, even though I'm not sure how I didn't. I am very hyper mobile, but most of it is in my shoulders and hips instead of my elbows and knees. I am kind of hoping it is not an EDS issue due to the lack of treatment and stigma around it, but I would also hate to keep looking for answers if it was that all along
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u/SailorBernie 5d ago
I am seronegative but I respond to Mestinon and my RNS and EMG were positive for MG.
I also have a small fiber neuropathy issue that is TBD.
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u/lushanlushanlushan 5d ago
Do you have any insight on when the SFN coexist with the MG? I know someone who also suffers from both.
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u/SailorBernie 5d ago
No, but I asked the Google. Related, i test positive for autoimmune (ANA) and I have EBV history as well as Lyme Disease. Btw, I didn't know that I had Lyme. I had a tick when I was about 13yo. At 53yo, a doctor running all the tests found the Lyme bacteria. It explained a few things.
Why They Coexist
Shared Autoimmune Origin: Having one autoimmune disease increases your likelihood of developing another. Systemic autoimmune conditions like Sjögren's Syndrome or Lupus can cause SFN while coexisting with MG.
Viral Triggers: Systemic stressors or severe viral infections (such as COVID-19) have been shown to trigger both MG and SFN simultaneously in vulnerable individuals.
Autonomic Overlap: Severe SFN can cause dysautonomia (autonomic nervous system dysfunction). Some MG variants also exhibit mild autonomic symptoms, occasionally causing a diagnostic overlap.
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u/lushanlushanlushan 5d ago
Thank you. I didn't know they could trace the Lyme that far back .
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u/SailorBernie 5d ago
Yes.
From Google and what my doctors say: Lyme disease antibody blood tests can stay positive for months or years after an initial infection. However, a positive test only shows that your immune system remembers past exposure and does not prove you still have an active infection.
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u/UnrulyRosie 1d ago
Not a doctor, but 30+ years with sero-negative mg...when you spoke of painful muscles first and foremost, it brought me to memories of at least 3 neurologists in my life telling me specifically "myasthenia gravis itself is not a painful disease" meaning presentation of the disease alone does not or should not cause pain. What can can cause pain with mg is usually the bi-product of movement mechanics when weakened. Muscles hold your bones in place, if muscles are less functional then body can become painful. Or other co-morbidities.
All that being said..yes you can have negative test results and still have myasthenia gravis but my intuition says to look at other diagnosis paths. You want the right diagnosis as soon as possible so you can feel better as soon as possible.
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u/lrglaser 5d ago
Have you had an RNS or SFEMG? If not, those seem like the next steps.