My Life is Changed !!!
Last updated: September 2021
Hi everyone 👋
I was former ICU staff nurse. In those 4 yrs of experience of my work is awesome ...yes, I was healthy n fit. I have never been sick except for some seasonal flu, that's all. After I married and had my son, I couldn't continue my work, so I left my job temporarily, as I thought. But who knows what's written in tomorrow ??
My initial MG symptoms
Last year in October 2020, I felt something in my body and observed carefully day by day. First of all, my two fingers on my right hand (i.e. middle n ring), one came down automatically. I can grasp at things but had weakness when I tried to lift up the fingers. I can't ... But after some time ( like 3-4 hours ) it's their normal place again. I was observing day by day. One week passed during those time. I thought it was because of using cold water, etc etc ...
Secondly, I had difficulty in swallowing even water. Also, slurred speech, right face numbness, pain in right side of ear lobe, tingling sensation in ear, ear ache, and right side headache. I took antihistamines tablet, lol. Who knew it would be MG. I had these symptoms and continued everyday. When I tried to talk I can speak two or 3 words only, others are slurred.
Thankfully my advantage of being health worker, I knew it's not a ordinary or simple one. My husband's family are all doctors, so I informed them and told everything. Stress, tension, panic are started. I even tested for smell also, opening perfume and nail polish, to confirm it's not Covid, lol. No flu sign at all.
I was talking to my doctors and they asked everyone about my condition. And one day my left eye is dropping and right eye muscle is weak, can't close fully. When I walk, lower limb muscle weakness. We thought bell palsy? GBS ? Etc etc ....
Because of Covid, we took appointment directly to neurologist doctor. My health is deteriorated but thankfully not having difficulty breathing. When I went for first checkup my dropping eye is serious. I saw both eye, can't see the things without lift up the head. But had dizziness and headache when I forced to open my eyes fully and move head. When my neurologist saw me, he advised to test ( nerve conduction , acetylcholine receptor antibodies ,CT scan thorax ). After test done on the next day, I was diagnosed with MG with thymoma. Nerve conduction is positive. Thymoma also present. Treatment given Pyridostigmine 60 mg with prednisone started. Plan for thymectomy after stabilized my condition.
I had different symptoms everyday. I can't take head bath. Problem in lifting up the hands, my shoulders are stiff, pain in joints, mainly shoulder joints and wrist joint. I can't tie up my hair, all above symptoms are continued. Just relieved in droopy eye after taking medicine. I was not happy nor active, totally lost and can't accept my disease. I never been sick before, not a single complaint in my previous life. 😭
Thankful for my MG healthcare team
My neurologist advised me to take immunoglobulin injection bcoz for my health condition. And medicine timing frequency is changed. Thankfully I was active and can move my hand. My symptoms have decreased slowly after immunoglobulin injection. ( 5 days hospitalised in last year December ) Thymectomy performed in this year January 2021 when my neurologist approved for operation. All doc's are taking care of me: cardiothoracic surgeon , oncologist, neurologist. I went for checkup every month in neurologist, took advice of tapering for steroid tablet and added immunosuppressant drug.
After being diagnosed with MG , I am lost totally. Thankful I've got them. They understand my disease, early detection without delaying time , without wasting time in other disease test ... because it's not a simple one to tolerate and check and wait for diminished our symptoms. It's spreading very fast. My neurologist told me I am ocular MG and partially of generalized MG too.
Today I'm accepting my life, who I am now. I can't change it, this one nor back to previous one. My anatomy body is changed, looks, everything ...our life must go on.
How often do you experience MG exacerbations/flares?