gMG and Me

Last updated: October 2022

The exhaustion started at age 30. I was waitressing and walking/hiking four days a week. One day bang I could not get up off the couch.

It lasted three months. I could not work during that time. It got better.

Better but then worse

I went in and got my LVN nursing license. But in 2004 my right arm got weaker and weaker. My chronic pain started. I could barely write. I no longer could paint or do my artwork. My fine motor skills shot. My vision became blurry on and off. My eyelids drooped on and off.

My hand and arm never fully recovered. I went through PT, testing... blah, blah, blah.

A holistic approach

In 2007 I went to a doctor who dealt with treatment holistically. As regular meds always made me sick. She said the blood work she did showed I had an autoimmune disease. From my symptoms, she thought it was MS. She also told for the dozenth time I was anemic and that I had be on B12 shots.

I could no longer go to her she did not take insurance and the supplements cost more a month than our house payment. I never followed up, I could no longer get insurance nor keep a job. So I felt it was better not knowing.

Another turn for the worse

I was feeling better but still had arm and hand weakness. It was in both arms at this point. I was in chronic pain from my neck down to my arms and hands Pain meds and muscle relaxers made me sick. I started having muscle spasms all over.

I had to change jobs to low-stress and low lifting. I also had to keep changing doctors as they all said it's or it's arthritis or it's your diet. My hands could no longer tolerate the cold - they changed color. I started having more problems breathing I was given an inhaler which helped. My anxiety started around then though I had been depressed for years. Counseling helped some.

Taking on a new role at home

In 2009 I got fired from my nursing job as I was falling asleep at work.

We got our granddaughter 11 weeks old. I became a stay-at-home mom. I could no longer work as a nurse because I was so limited in energy. I could no longer wear heels my ankles got weak I could not walk in them. At this point lifting my arms was hard.

Serious symptoms

I slept as much as our daughter did as a baby. I would almost fall asleep at the wheel while driving. I would lose weight and put it back in. When she started school I would take her, come back home and sleep until it was time to pick her up. I cooked and did what I had to survive.

In 2018, I started having extreme rib pain. I could no longer take deep breaths. I was diagnosed with allergies and asthma. I started shots. In my first shot I left 45 minutes later it was as if my lungs quit working - I could not get air in or out.

My inhaler did not work. I went home and used my diffuser with herbs. It helped relax me so I could breathe again. After a year of this, I stopped the shots.

Getting tests and second opinions

In 2019 I had a PFT and it showed I could not get enough air out. Being a nurse I got a written copy. I was beginning to learn to hang on to every test result.

I got a letter my primary care wrote me saying all PFT is normal because all other results looked fine. I took my test to respiratory friends (I have two) and they both said it was NOT normal.

My primary refused to send me to a pulmonologist. But luckily my allergist referred me. I found a rheumatologist who saw me without a referral. He put me on a low dose of Prednisone and a high dose of Plaquenil.

Finally, a medicine that helped

Ten days after I started Prednisone I could see again my vision clear! I started a anti-inflammatory diet which helped some with chronic pain (I had had migraines since I was 30 with eye pain mainly). I changed primary care to an intern.

Other symptoms arose

Six months later my legs had gone out on me. I had been having weakness stumbling tripping over things and walking into walls. Then I would fall down and my legs would not support me.

I would choke on things and had a swallow test yet "nothing" was wrong. My speech also went, I could no longer sin and it got horribly slurred.

For about five years I could no longer go out in the sunlight in summer. Or when it was above 75.

Finally, a diagnosis!

I went to my new doctor. He said I think you have MG. It turned out to be seronegative. After going through a ton of testing he sent me to a neurologist who said seronegative MG.

My intern put me on Pyridostigmine 30 mg and I could walk again without a cane. I went to ER and had an upper respiratory infection so he put it up to 60 mg four times a day so I could deep breath again.

More testing is going on...

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