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Hi, I'm not (yet?) diagnosed with MG, but I have a strong suspicion, and my doctor does too and is currently doing tests to check on it.

Usually, my symptoms are relatively mild by the looks of the worst symptoms on here. The skin all around my eyes sags, my lower lip sticks out, I'm often a bit short of breath, my legs and arms always feel tired like I've done a very heavy workout yesterday, I'm always pretty tired. I wondered about something that happened the other day when I was *completely* wiped out.

I had a stomach bug, and had ended up in the shower at 3am, with various disgusting things flying out of either end. I was completely and utterly exhausted, and had to sit down. Once I was done, and ready to go back to bed, I realised I just couldn't. I was repeatedly thinking "okay, time to get up", and usually when I do that some subconscious process happens, and up I stand. In this case though, it was like that part of my brain was unplugged. I thought it, and nothing happened. I thought it again, and nothing happened again. I had to yell for my wife, and get her to pull me up off the floor.

Does that sound like other people's experience with MG, or is that something else going on?

  1. Wow, I've been diagnosed a few years now and those classes and things are confusing and not too helpful for even me. No offense meant to OP, but this disease can be so overwhelming especially in early days. MG is such a very personal disease that I found I couldn't really compare myself well with others and in fact stayed out of forums and things for quite awhile after my beginning frantic research times.
    Don't worry if your symptoms are much different than anyone can tell you about. Just try to focus on managing each one as they come.
    That said, yes, paralysis happens with MG and it feels exactly like that. I remember in the early days of my worst symptoms just thinking "wow, this is what it's like to have my brain tell my body something and it just can't respond".
    I walked with a Dr. And she would give me good feedback week to week because I would feel like I was doing everything the same and giving the same amount of effort, but the walks would take twice as long even though we did the same route and she would tell me if my feet were pointing out more or my breathing was more or less gasping.
    You learn to monitor yourself differently and you learn what works to help your body and keep you even.
    I suggest researching vagus toning breathing as it's the only actual way to improve diaphragm muscle tone, and it can force more acetylcholine into your system.
    It is helpful even for people without MG. There's so much to look up and look into, take things one bit at a time.
    I'll be keeping you in my thoughts.

    1. 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"
      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"

      - Jodi, Team Member

      1. Hi hopefully others will weigh in with their experiences. In the meantime, I included some information on MG - and and I hope this information is helpful as you and your physician work together to get to the root cause of your symptoms. Please feel free to reach out if we can help locate any other MG related info. Wishing you some relief. Kindly, Jessica, MG Team Member

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