Sharing the MG experience

MG Information > Sharing the MG experience

This chapter is given over completely to the personal experiences of some members of the group.

Group members tell us of symptoms they experienced before diagnosis.

The contributors range from those who are still at school, wives who are at home with husbands working, men and women who are still able to work, be it sometimes part time, and those who have retired.

From these brief comments you will quickly appreciate just how difficult it is to diagnose MG as so many of the symptoms are non-specific.

Female 31-40 years
I was at a Conference Dinner and was laughing at something when I became aware that my face wasn’t responding – later I discovered my arms were weak and I had double vision.

Female 14 years
Diagnosed at age three when in hospital with breathing difficulties. I was unable to swallow saliva. I also had droopy eyelids and muscle weakness in arms and legs.

Male 71+ years
At 75 years I developed difficulties in swallowing/ choking and muscle weakness in legs and arms. GP referred me to Neurologist who confirmed MG.

Female 51-60 years
I was diagnosed at 47 years after two operations when I had difficulty coming out of anaesthetic. I then experienced swallowing and speech difficulties, and muscle weakness.

Male 41-50 years
At 48 years of age I developed double and blurred vision and droopy eyelids. Underwent CT scans and eventually was referred to a Neurologist who diagnosed MG. Slurred speech and weakness in legs has occurred since I underwent a Thymectomy.

Female 21-30 years
I had been feeling very lethargic and heavy. My eyelids became droopy. The local GP on seeing me said immediately “This may be MG”. I was referred to a Neurologist and have undergone a thymectomy.

Female 75 years
During a Busselton Health Survey (many years before) I was contacted by the Drs and told my blood test was abnormal. They told me to seek medical advice if I had any unusual sickness or symptoms. I later had blurred vision, droopy eyelids, difficulty swallowing and speaking and my gait was unstable. I had pain in neck muscles and at that time (I was 56 years old) doctors conducted all manner of tests to prove the Mysathenia because it was so rare a disease.

Male 71+ years
At 49 years of age when I developed double vision, droopy eyelids, difficulty swallowing and speaking and unstable gait with weakness in arm and leg muscles. A friend, a nurse, suggested I see a Doctor. The Doctor said I was depressed. Sought further advice and was diagnosed with MG.

Female 41-50 years
I was diagnosed at age 44. Whilst undergoing surgery for gall-bladder removal I had a reaction to anaesthetics. Tests after surgery confirmed M/Gravis. I had previously had difficulty with voice change which made me seek medical help (I was referred to a speech therapist) my symptoms were not associated with Myasthenia Gravis and I therefore was not diagnosed until I had gallbladder surgery.

Male 71+ years
At 67 years of age I woke one morning with droopy eyelid (L) and muscle weakness in (L) hand. Had been feeling tired over period of six months but not worried thought it was normal. My symptoms developed to include swallowing and choking difficulties, slurred speech and unstable gait

Female 51-60 years
I was diagnosed at age 36 when I was experiencing breathing difficulties, unable to lift head and repetitive action weakness etc. Looking back I recognised I had had symptoms prior to diagnosis, fatigue as a child and unable to pick up new born to be breastfed at 25.

Female 41-50 years
I was diagnosed at age 33 years. I already had SLE, then developed tumour of Thymus (Non Hodgkins Lymphoma) and Positive Ab discovered as part of work up. Retesting of blood tests taken 2 years earlier showed positive Ab. I had previously experienced general weakness, and an episode of failure to start breathing post op. Looking back on my symptoms, I am struck by how non specific they were for some years. It was only later that I had changes in my voice and dysphagia.

Female 71+ years
I was diagnosed at 75 years when left eye closed during sleep and remained closed. I also had double vision, slurred speech and unstable gait.

Female 51-60 years
I was diagnosed at age 30 in Malaysia and it was Ocular Myasthenia. I am one of the lucky ones. I am at present in remission for the last 12 years.

Male 61-70 years
Diagnosed at 54 years of age when one eye kept closing, double vision and trouble swallowing water which used to blow out my nose. Trouble saying words with the letter S.

Female 61-70 years
Just prior to leaving Britain in 1968 I was diagnosed as being stressed. On arriving in Australia, thyroid problems were wrongly diagnosed and then myasthenia was correctly diagnosed. I was experiencing double vision, droopy eyelids, and difficulty swallowing and muscle weakness. A Thymectomy was performed in 1987. Its success was not as good as I had hoped but nevertheless with the aid of drugs I manage most tasks fairly well (no long distance driving). Trying to lead a stress free lifestyle is an advantage.

Female 61-70 years
I was diagnosed at age 64. Admitted to hospital with fluid on lungs rapidly deteriorated to point where couldn’t swallow, speak, keep eyes open or walk. Diagnosis took 3 weeks after numerous and extensive tests. Finally diagnosed with Tensilon Test. This lady then underwent a Thymectomy and her symptoms are controlled by medication.

Male 71+ years
When I was 60 years I was diagnosed with MG after a car accident. I had, and still have blurred vision, droopy eyelids, difficulty swallowing and an unstable gait. My leg muscles are weak.

Female 71+ years
Diagnosed at age 16 years when it was not known here in Australia. I was fortunate enough to have an uncle who was a physician who wrote to cousins in England who diagnosed MG. I think I had had symptoms from the age of 10 or 11 when I was always being admitted to hospital, and being told there was nothing wrong just nerves. I was sent to England operated on in 1947 and had a large tumour.

Female 71 + years
I was diagnosed at age 74 after experiencing double vision. The Neurologist confirmed his initial diagnosis of MG after Tensilon and electrical tests. I had been experiencing symptoms of droopy eyelids, difficulty swallowing and choking and muscle weakness in arms and legs, but these had not been recognised as symptoms of MG but rather symptoms of ageing. My condition is controlled by medication and I am able to lead, although restricted, a fairly normal life.

Male 71+ years
At 66 years of age I was driving a car when suddenly I saw two of everything! I also had droopy eyelids. My UK neurologist had my thymus removed immediately. Here in WA my consultant thought that rather ‘over the top’ and he would not have recommended it at my age.