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Unusual presentation of symptoms

Hello I wanted to share my unique story in hopes of making sense of a mystery. My doctor after about a month of trying to rule other things out is testing for MG. waiting for the results.

My symptoms started 5 days after my moderna shot. I first noticed weakness just in my legs along with shortness of breath while laying down at night and chest pains. The first couple of days I tried ignoring it but my shortness of breath started happening during the day as well after doing simple tasks like going up the stairs etc.
So on Nov 24 I went to the ER. they did a COVID test which was neg , an EKG which came back normal and a chest x-ray which showed nothing remarkable. After several hours the doctor concluded , much to my shock that I MUST have asthma. I was sent home with an inhaler which didn't help, only made my heart rate and chest pains worse. I continued on until Dec 14 and the chest pains , leg weakness and shortness of breath persisted into daytime hours. The same tests were run, nothing was found. No one decided to look into the cause of my muscle weakness. Was sent home that day with "you have asthma, use your inhalers". Jan 11 I was at work , sitting at my computer when suddenly I felt all the blood rush from my face and weakness overcame my neck, arms and legs. I work at a hospital so luckily lots of nurses were nearby, and they came and helped me. I became a patient ; my heart was racing and pounding, and I told them the couple hours that I was in the bed that my neck arms and legs felt heavy. Even to hold my phone up to text my husband felt like too much. Holding my head up felt too difficult. I knew I wasn't going to be able to drive home so I had my husband come get me once they discharged me. They ran basic blood work, a d dimer to rule out a blood clot, and another x-ray and EKG which all were normal. I was diagnosed with lightheadedness. How helpful.
That day I went home, the whole rest of the day I could do nothing but lay on the couch and feel pins and needles and weakness sweep up and down my body. at dinner time I tried sitting at the table to eat but my head felt too heavy. Picking up a fork was possible but my movements felt forced and like I really had to THINK about the things I wanted my body to do. This was also the first time I noticed difficulty chewing and swallowing. It made my neck feel so tight and uncomfortable that I just gave up. This horrible weakness continued for days, including being short of breath and having palpitations. After a couple days of resting I felt better, still weakness in my legs and shortness of breath randomly.
Jan 17 I was back at work, walking all over the hospital that day giving my coworkers breaks and lunches. I felt short of breath and still had weakness in my legs but pushed through. I went home at the end of my shift and went to bed, only to wake up in the middle of the night feeling like it was taking extra effort to roll over in bed. My neck, arms and legs were weak again. My body felt so heavy and I began to panic. Realizing my husband was just driving home from his shift and I was home alone I called 911 because I seriously thought I was going to pass out. The operator calmed me down and the EMS arrived. Normal BP and heart rate and O2 sat. By then I had calmed down and told them I didn't want to go to the hospital. I actually had an appt with my PCP in the morning.
In the morning I felt ok and was sure I was well enough to drive myself to the doc. I was just a few minutes away , holding tightly to the steering wheel because of poor road conditions (which I think made my muscles go weak, in retrospect) and I felt the weakness sweep over my body. I prayed that I could make it to the doc so I could have help. Arriving and still able to walk I asked for a wheelchair because I was so weak. It was very overwhelming. In the room, my doctor checked my heart and it was pounding and he prescribed a heart med. I told him my body was weak all over but that was not addressed at this visit. For the next week, close to two weeks I lived miserably in bed unsure what was wrong with me. It wasn't until this past week after my doctor was satisfied with my visits to a cardiologist and a pulmonologist (who ruled out asthma!!) That he began to focus on this nagging weakness. After asking questions and discovering I have a ptosis by mid day and I've had bad eye twitching for months along with this weakness which is mainly in my neck and has made swallowing difficult he finally decided it's either MG, Guillian Barre or maybe Lambert Eaton triggered by the vaccination. I'm mostly resting and trying not to set off my symptoms because the two bad episodes happened after working long and hard at the hospital.

  1. So many of our symptoms are unusual and unlike anything else that’s why they call it the snowflake disease everyone is different but we’re all diagnosed with the same thing. Best of luck to you

    1. this sounds like me never had symptoms until 14 yrs later finally 4th dr finally said MG

      1. Thank you everyone. I am going to the Mayo Clinic In April. My primary care doc did an MG panel which came back negative. Who knows what it is, but I'm praying the truth will come out.

        1. Same with me. My dr. first did an MG test last year that came back negative, but an ophthalmologist told me I have MG symptoms -- drooping eyes, double-vision, poor eye muscle control -- based on her exam of my eyes and the other symptoms I told her about such as foot drop and general weakness and pain in my legs. My eye dr. ordered another MG blood test to confirm her diagnosis, and my neurologist ordered the blood test from Mayo Clinic. Nothing back from either test, but I have an appt. with the neurologist next week and she might go over the results of the blood test thru Mayo then, IDK. Supposedly this test is much more sensitive, and so might show the dr. more info.

        2. Have your doctors examining your test results discussed or mentioned seronegative MG? - Jodi, Team Member

      2. you have quite a story. It pains me to read that many of the doctors you saw didnt try to figure out why your body was weak or try to fully listen to you. Not to mention you work at a hospital yourself, that's sad to hear. Enough about that. It's been over a month since you posted, do you have any updates for us? Were they able to properly diagnose you? How are you doing since then? - Jazmin (team member)

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