What to expect from MG

I am male 53 years old. I was diagnosed in September or October of 2020. I had had problems with my jaw, chewing, pronouncing my s's and r's, had a lot of mucus and phlegm, weakness in my arms and legs, in December of 2019. I had no primary doctor, I went to a clinic I paid out of pocket. The doctor couldn't figure out what was going on, so I got him to give me referrals to specialist. Finally saw a neurologist and he could tell what was wrong just by looking at my face. Barely noticeable one of my eye lids was lower then the other. He sent me to get blood work to determine if I had MG and if so what kind.

He put me on Pyridostigmine (Mestinon) 60mg x 4 daily, and Prednisone 10mg daily. I started taking the medication and I felt a little better. I really didn't look into the disease. I worked as much as I could. I had a pickup but got rid of it and purchased an SUV that was lower to the ground Because it was hard to get into my car after a couple hours out and about. I got a ramp put in for front door, because I could not clear the steps to front door. I am really tense and aggressive, I just kept pushing myself. My mentality was, its all in my head. I am an older man have hurt myself and been in pain before and eventually whatever the problem is goes away.

That is not the case with MG. In March of 2022 I had problems with sciatica. With MG stress and pain, just make things worse. I went to the hospital first week of April and released the same day, I believe this was an MG Flare or MG Crisis. Went to hospital in May, and had to go on respirator, was there about 16 days. Went back into hospital mid June for 17 days.

Every time I went to the hospital I would have different symptoms. Between the hospital visits in May and June, My mouth didn't work. When I got out the last time I had a droopy eye lid for a month. I recommend rest and as little stress as possible. Do some research on symptoms, triggers and diet. Find MG specialist in your city. Get a second opinion or see a neurologist.

I am currently also taking Vyvgrt every other month. It is an infusion, I take once a week for 4 weeks, about every 30 days. This makes me feel real good. But this past summer was very difficulty, could be the heat and work related stress made things worse. If you are certain you have MG I recommend learning what you can about triggers, symptoms, what drugs not to take, relax and rest as much as possible.

Also I was also diagnosed the exact same way as you. I had a very bad upper respiratory and was given a Ct scan for pneumonia. I ultimately did not remove my thymus and I have a very mild case for 7 years now. I have absolutely no plans to remove it either .

I find it puzzling that doctors can somehow convince us patients that the way they take out the thymus can make a difference in the result. Just think about it . Whether you remove another body part by open body or keyhole surgery will it make a difference? I think not, People need to start questioning the accuracy of that because the real reason could be many aren't trained to do robotic and not that the robotic is not as good.

Hi yes i do, they said i have a hypertrophic thymus, have no clue what that means, but i’m still waiting on the appt, they’ve referred me to general surgery.