Glenda has been a member of the Australian Myasthenia Association of NSW for many years. Her experience with Myasthenia is set out below.
“Hi, my name is Glenda Bidner, I have now had Myasthenia Gravis for 42 years. What you are about to read is my first 5 years with this disease.
My trouble started when I was about 17 years old, not long after leaving school. I first noticed, one night whilst trying to knit, that my fingers went a bit numb. Not long after this, whilst trying to board a bus to go to work, I just collapsed. It was like my legs weren’t there. I had noticed a few days earlier that my legs were tired and heavy in the morning, but I put no importance to this.
A doctor I saw that day, and he said that I was anaemic and put me on iron tablets. A few days later, the same thing happened again. I was then sent to a Neurologist, who after running a few test, said that I was quite normal and healthy and to go home and forget about it. However I started to collapse more often, and by this time I was getting really scared of buses as I could see myself falling every time I went to board one.
I started to walk to work to avoid the problem with the bus. However, this also became a problem as I would get really tired in the legs, and would often fall just trying to walk up a gutter. I would often have to be driven home by some kind soul. I was then sent to a second Neurologist who also said I was all right and that nothing was wrong.
Now after two professional opinions, it was thought to be psychological and I was sent to a Psychiatrist. As I was in a car accident just before this all started, it was thought to be all a nervous reaction.
The first Psychiatrist was in Sydney and we had to travel from Wollongong every few weeks for about 8 or so months. I then started seeing a Psychiatrist in Wollongong. I was under his care for 2 or more years. I continually got worse, telling him all the time of every new symptom. By this time, I had double vision, my speech was slurry, I would try to play squash but would fall over, and I could not walk long distances without assistance and normally would stumble and fall. I could not walk up steps I’d fall down and really hurt myself. I could no longer do my own hair because I couldn’t hold my arms above my head. I was having trouble chewing and swallowing, so I would go for a couple of days eating barely enough to keep a sparrow alive. I would also choke and get a lump in my throat when I tried to eat. I lost about 16 kilos and was looking quite sickly. I could not smile or even keep my eyes open for very long. A hot shower would make me very weak and I would often collapse not long after. I could not dress myself and would often fall over just trying to pick something up from the floor. I would only have to lift my leg to get in the shower or get in the car and would fall over backwards. I was becoming a nervous wreck and could not understand why all this was happening to me.
The Psychiatrist said I was doing all of this to myself that I was putting it all on for attention.
Also during this time I tried other things to try and find out why I was sick. I saw a Naturopath, a Chiropractor, and even tried Hypnosis and Acupuncture – all to no avail.
We then asked the Psychiatrist to run more tests to see if something would show up. He agreed, but we didn’t know until we got to the hospital that he was putting me in the Psychiatric Ward. All they did in this ward was give me huge amounts of Tranquillisers and Anti-depressants, which gave me a lot of trouble with swallowing. I was like a walking zombie, and wanted to sleep all day. This was supposed to make me forget my problems, but only added to them! I cried a lot in this place, and promised to be good so they would let me go home. That night I had a really bad attack with my breathing and an Ambulance had to be called. When they arrived I had collapsed on the floor and stopped breathing and had to be revived. This was terrifying for my family and me. The Ambulance driver said I was on enough medication to knock out a horse, and should talk to the Doctors at the hospital to which I was rushed for an examination.
The Hospital was not much help. The Doctor said he still thought it was all nerves and to go back to my Psychiatrist. This I didn’t do. I got married 3 months later, even though my Psychiatrist had told my parents that I was too mentally ill for marriage when they had discussed it with him before. We had quite a small wedding, as I was so sick.
I was not seeing any Doctors at this stage, as I was sick and tired of being told there was nothing wrong with me. I was trying to do everything around the house that I could but it was very difficult when I was so weak. I battled on as best I could with the washing, ironing, cooking and cleaning. I continued like this for about a year and then I got so bad that I could not even get out of bed and dress myself. I was so sick that I could not be left alone and had to go to my parents’ house in the afternoon to be looked after when my husband went to work. One afternoon I was really bad and could barely sit up in bed. I had trouble breathing. It was then that my mother arranged an appointment for the following morning with a new Doctor near us.
I had to be helped into the surgery. The Doctor was astonished when he saw me, and made an appointment with a 3rd Neurologist the next day. I didn’t want to go but did so just to please everyone. I’m so glad I did – as it was this Doctor, having asked a lot of questions and carried out a Tensilon Test, who finally put a name to my problem.
After nearly 5 years of searching, I finally found out that I was not nuts as everyone thought. I had a disease called Myasthenia Gravis.
I hope that telling this bit of my history, I may help someone else.”