My Life is Changed !!!
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.
Did you know what myasthenia gravis was prior to your diagnosis?