Hey! I am sending much compassion your way as you await answers. Make sure your doctor does blood work to check for the antibodies : (1) Acetylcholine receptor (AChR), (2) Muscle-specific tyrosine kinase (MuSK), (3) Low-density lipoprotein receptor-related protein 4 (LRP4). These antibody test results can all be negative, and you still have MG, referred to as seronegative MG. "Around 8 out of 10 people with MG will have AChR antibodies in their blood. Only 1 out of 10 will have the MuSK antibodies, and even fewer will have LRP4 antibodies.
Roughly 6 out of every 100 people with MG will have seronegative myasthenia gravis, meaning they have no common antibodies. People with ocular MG are more likely to have seronegative MG" https://myasthenia-gravis.com/blood-tests.
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This sounds like it could be MG. Have you noticed drooping of your upper eyelids or feeling like your body or specific muscles is turning to stone after repeated movements? "The Myasthenia Gravis (MG) Foundation of America divides MG into 5 main classes and several subclasses. This is how doctors talk about MG. People with MG generally do not use these terms. Here is what each class and subclass means:
Class I: Eye muscles are the only muscles affected. May have trouble opening the eye. All other muscle strength is normal.
Class II: Mild muscle weakness anywhere in the body. May also have eye muscle weakness of any severity.
Class IIa: Mild muscle weakness that targets mostly the arms, legs, neck, and back muscles. The mouth and throat muscles may be less affected.
Class IIb: Mild muscle weakness that mostly targets the mouth, throat, and breathing muscles. The arms, legs, neck, and back muscles may be less affected or equally affected.
Class III: Medium weakness affecting any muscles other than the eyes. The eye muscles may also be weak.
Class IIIa: Medium muscle weakness in the arms, legs, neck, or back. The mouth and throat muscles are less often affected.
Class IIIb: Medium weakness in the mouth, throat, and breathing muscles. Muscles in the arms, legs, neck, or back may also be affected.
Class IV: Severe weakness affecting any muscles other than the eyes. The eye muscles may also be weak.
Class IVa: Severe weakness in the muscles of the arms, legs, neck,and back. Mouth and throat muscles are less severely affected.
Class IVb: Severe weakness in the throat, mouth, and breathing muscles. Sometimes arms, legs, neck, and back muscles are less severely affected. The person may need a feeding tube but not help to breathe (intubation).
Class V: The person needs help with breathing. This usually means the person needs intubation and a mechanical ventilator. This does not apply to routine recovery from surgery"
https://myasthenia-gravis.com/types.
- Jodi, Team Member