My Myasthenic Journey – Carole Lawrence

To me the symptoms of Myasthenia Gravis are like jig-saw puzzle pieces without the picture on the lid of the box to guide you to as to where they all fit.

I was diagnosed with MG in September 1973 at the age of 29 years after going from doctor to doctor without success for nearly 8 years and being labeled a ‘neurotic housewife!’

But many years before that, when I was a child of about 8 or 9 years I remember my arms and legs sometimes going numb at night, then feeling like lead-weights had been attached to them. My fingers would feel like sausages not fingers as I couldn’t grasp anything with them. I didn’t like it, but I just assumed that it happened to everyone as they went to sleep so I told no-one about it. Also the blankets would feel heavier and heavier on me until I could hardly breathe! [It was actually my chest muscles, not the blankets, but I didn’t know that back then.]

When I was 14 years old I used to win running races at school and inter-school competitions without any effort. Then one time in a sports competition in Mildura I won my first race without a problem, then I had another race in another distance not long afterwards and I came 2nd. I was a bit miffed, but I put it down to no rest in between races [right on!]. The third race, you guessed it, I can 3rd. But the 4th race I collapsed at the starting line. I was so cross with myself as my legs had just turned to jelly and I couldn’t work out why. That finished my sports career as I wasn’t selected again as I was considered not reliable. I remember kids calling to me from the side lines, ‘keep going you’ll get your second-wind!’ What second wind, I thought I hardly have a first one!
In 1965 when I was 21 and my first daughter, Robyn, was 9 months old I suddenly developed double-vision. I went to an eye doctor about it and as he put atropine drops in my eyes to examine them – I went blind and stayed that way for a week! When I got my sight back one pupil was larger than the other and remained so for years.

In 1966 I had my second daughter, Heather. I found it very hard to ‘hold her in,’ so to speak as the pregnancy advanced and she practically popped out at birth – but she was very blue and not breathing on her own. She had to be revived with oxygen but even when she did, she didn’t cry, neither could she suck. She also had an Apgar score of 4! [I later found out that she was a neo-natal myasthenic]. Heather was hard to feed for many months until she suddenly snapped out of it – I guess when my antibodies had finally left her system.

In 1968 I had the first of 3 operations on my neck. [The other 2, bone grafts, were in 1977 & 1988]. I had been injured at birth; the doctor had put his forceps straight through my neck injuring both the neck bones and muscles. Up until the operation in 1968 I couldn’t turn my neck. If I wanted to see behind me I turned around. My head felt so heavy by then that it felt like it would fall off my neck – hence the surgery. It supposedly would correct it.

Problems happened with the anaesthetic; they were unable to wake me for 24 hours and even then it was touch and go as to whether I’d fully recover. It was when I gave birth for a third time in 1969 to my son, Martin, that I finally realized something was really wrong with me. I hardly had any energy, I just couldn’t hold him in until the doctor came to deliver him, my muscles just weren’t strong enough. My eyelids were droopy when I looked in the mirror in the bathroom at the hospital the next day. Just to clinch it a cleaning lady looked at me and asked, ‘why you so angry?’
Angry? I was shocked by her question, I wasn’t angry; I was just tired, very tired, but certainly not angry. I took another look in the mirror and my face did look angry. [Later on I was to discover that was a MG grimace or ‘mask’ – not anger.] Oh, how we MG patients are misjudged!

From then on things went rapidly down hill. I couldn’t hold onto my baby I had no strength in my arms. So I would change him and bottle feed him in his cot. That way I knew I couldn’t drop him. I went through 2 complete sets of dinner settings as I kept dropping them. I also fell head first into the kitchen sink a few times as I was doing the dishes; my head was just so heavy, and I had to be pulled out by my husband, Trevor, or I would have drowned. Thankfully he took over washing the dishes from then on as he acknowledged I must be REALLY tired.

I also found brushing my hair and the children’s hair was a very exhausting task, so I had my long hair cut off and my girls’ hair cut as well. Hanging out the washing was a chore I hated as after awhile my arms just wouldn’t come down and I’d be stuck on the clothes-line until feeling came back into them. Writing letters became torture as after a few lines my writing became unreadable, so I took to sending cards or short notes to my family and friends interstate. Talking became almost impossible as my voice gave out after a few sentences. It was embarrassing to say the least. People would look at me expectantly to finish my sentence and I couldn’t! Sadly I had to give away our beloved Corgi as I couldn’t take her for walks or throw balls to her any more. She went to a good home thankfully. Then I started falling asleep on the lounge room floor. Literally ‘falling’ I had no strength in my legs to stand up any more. I had to put my 3 kids into the baby’s playpen to keep them safe as I never knew just when I would keel over and I was afraid that one of them might go outside and get hit by a car on the road. But they were good kids. The eldest, Robyn, just 4 would care for 2 year old Heather and 6 month old baby Martin in the playpen while I slept on the floor next to it. I had to; I just couldn’t keep my eyes open and my legs just wouldn’t hold me up.

I nearly lost my marriage over this as sometimes my husband would come home from work and find me still asleep on the floor, the kids all crying and nothing cooked for dinner.
He gave me an ultimatum, find out what’s wrong or he’d be off! I went my GP, he thought my ‘falling’ attacks and sleeping for hours was probably due to epilepsy and he sent me for tests. When they came back negative, he was baffled and sent me to a Consultant Physician [who failed to do any strength tests]. He decided that it was all in my head, that I was a neurotic housewife! and sent me to a psychiatrist.

My big mistake I now realise was I only went to see the doctors early in the day when I knew I’d have the most energy, that way of course they didn’t see me at my worst. The first thing the psychiatrist said to me was, ‘why are you so angry?’ That was the second time I’d been told that in 6 months and once again I thought, ‘But I’m not angry, I’m just very tired.’ I’d put my 3 kids into a day care centre and then had to rush off to the psychiatrist’s office some distance away and climb lots of stairs, as there was no lift – but angry, no?

I kept going to see the psychiatrist for a year until he finally told me that there was nothing wrong with me, I was quite normal. One good thing came out of seeing him; he talked me into getting my driver’s license. He said it would free me up from walking everywhere or taking the bus. Strangely it seemed to help as my symptoms abated for a couple of years.

Then in 1973 the feelings of numbness and heaviness came back into my limbs. Just about every night my whole body would go numb and I’d have to do my best to wake up my husband; not easy as I’d also lost my voice. So night after night he’d rub my limbs until the feeling came back into them again and then they would start to really hurt. One night all but the pointer finger on my left hand came back to life, it stayed numb even in the daytime. So I plucked up the courage to see my GP about it. [I hated going to see him as I felt like a hypochondriac] He wasn’t sure, but he sent me to a neurologist who was new in town, in case I had carpel tunnel syndrome. The only appointment I could get with the neurologist was in the late afternoon in the middle of the school holidays. I nearly howled! How could I possibly get myself and my 3 kids there then? I was usually resting at that time. But I went and nearly fell asleep in the doctor’s waiting room as I had to wait about half an hour for the doctor to see me. Once again my kids were good, they read, they coloured in or just sat quietly beside me.

When my turn finally came to be seen by the doctor I could hardly get out of the chair and I more or less stumbled into his office. I sat down heavily and he looked at me for only ½ a minute I swear and then said, ‘I know what’s wrong with you. I know what you’ve got!’ He seemed to be quite excited about it and I began to wonder if he was a kook! I mean I’d seen plenty of doctors over the past 8 years and all of them told me there was NOTHING wrong with me and yet here was this chap, fresh out of medical school [well specialist medical school] who takes one look at me and says he knows what’s wrong with me – and he hadn’t even taken a look at my finger!

I started to tell him that and he said, ‘forget your finger; I’m talking about what’s really wrong with you! I believe you have Myasthenia Gravis!’ [I’d never even heard of it nor could I say it or spell it for ages]. He told me he could tell by looking at my face and my droopy eyelids [at least he didn’t say, ‘Why are you so angry?’ because he knew I wasn’t!] He asked me questions [a first as well, as all the other doctors expected me to tell them what was wrong with me]. He asked did I have trouble brushing my hair? I said yes, I had to have it cut off. Did I have trouble hanging out the washing? Once again I said yes. Then he said go home and pack ready for a 2 week stay in hospital to have tests done, as he was 99.9% sure he was right in his diagnosis. He also told me as I was about to leave that it was just as well I came to see him today, because if not I would have been dead in 6 months!

As I left the neurologist’s office he did so as well, he was so happy he could hardly contain himself! He told his receptionist that he’d found one! He didn’t think he’d find a patient with Myasthenia Gravis until he’d been in practice for at least 10 years – and it had only taken 2 months! The first thing that happened to me when I went to hospital was a Tensilon® test. I had been warned there would be side effects, but I said to go ahead anyway. It was only about ½ a minute after the injection before my eyes went funny, they seemed to flip over inside my head and my limbs began to shake and I couldn’t swallow, then another ½ a minute and I could suddenly breathe properly [I’d been struggling to catch my breath for so long that I sounded like a steam engine and felt about 80 years old!] Then my arms came to life and in a very strong voice I asked could I have a phone book to rip in half, I felt so strong! Sadly the effect only lasted a few minutes and I was back to feeling tired and breathless again. But my neurologist was over the moon! He’d been right all along. Then came the hard work seeing how long it took me to be completely fatigued – which wasn’t very long at all. I had to climb stairs, walk on tread-mills, lift weights [very dangerous!] and I had to be strength tested against doctors again and again. Boy it was hard work and very tiring. But I was in the company of about a dozen or so other ‘difficult’ cases, but no other Myasthenics. Finally I was started on Mestinon® 60mg a few tablets at a time until the doctors thought they had the dosage just right. I was also put onto Midamor® to help retain potassium so my muscles wouldn’t cramp and go into spasms as they had been doing. Strangely enough my finger stop being numb when I started on the Mestinon®! So it did its job, it pointed me to the right doctor to diagnose me.

Then in 1975 things started to go downhill again. My breathing grew worse, I couldn’t walk up hill or climb stairs and worse I’d started falling asleep again. I went back to my neurologist and he said the time had come for me to have a Thymectomy. I was told the risks that as I was so bad now with the Myasthenia that I might not even survive the operation. Luckily for me a thoracic surgeon had just arrived in Canberra after working for years in Uganda and he was going to operate on me. I was told by him that if I had a tumor in my thymus gland I would probably be dead in 6 months, but to do nothing I would definitely be dead in 6 months! Some choice! He also told me I only had a 20% chance of surviving the operation, but if I did, I could look forward to at least 20 more years of life. [I have now survived 36 years!] He told me to go home and put my house in order and ‘I don’t mean clean your house!’ he added. [I was told later that he got in touch with Guy’s Hospital in London as he’d never operated on a Myasthenic patient before and needed their advice].

Before the operation I was shown the ICU where I would be taken afterwards and the life-support machine I would be wired up to, so that I wouldn’t panic when I woke to find myself with tubes and wires coming out of me, especially out of my mouth. Well as the saying goes, ‘the operation was successful, but the patient died.’ I did die even though I was on a ventilator in ICU. My husband tells me he saw the machine above my head flat-line and alarm bells went off. In the mean time I was very happy where I was, thank you very much, and I was angry when I was zapped back to life! I’d been dead several minutes. The nursing staff said I died 6 times altogether and I was in ICU for 10 days until I went down to an ordinary ward for 6 weeks. I was still very weak, and I had developed a nasty cough which no medicine they gave me cured. The thoracic surgeon suggested a cruise in a warmer climate would do me good and so my husband, Trevor, hurriedly arranged a berth for us on the P&O ship Arcadia to Fiji. Our children went to Victoria by plane to stay with my sister in the country, so I had nothing to worry about but just get better. I threw off the cough somewhere in the Pacific Ocean and had a great time on board ship and visiting the various ports of call.

I have had 6 Myasthenic crises over the years due to infections, all leading to a stay in ICU, one from which I nearly died. I find it hard to let medical staff in hospitals know what Myasthenia Gravis is, you’d think they’d know! But I have found that is often not the case and unfortunately for me, they often will not listen to me either! I know my illness and I know what is needed to treat me, but they seem to get bent out of shape when I tell them they are not treating me correctly! I know because one time I was nearly killed by a young doctor in the Emergency department who injected me with a whole vial of Tensilon® instead of only a few mls! He then administered adrenalin to my heart and I revived, but it gave me a wake-up call. ‘Keep out of Emergency departments of hospitals is my rule.’

Now at 66 years of age I still don’t like climbing stairs – at least up stairs as that takes strength; going down stairs is fine. I also can’t walk up hill without slowing down considerably. Mind you going down hill is difficult as well as I have no brakes, but thankfully I use a walking stick now [I have for a few years] and that helps to slow me down or I’d probably fall over and roll down the hill! I have a rest each afternoon for a couple of hours and I try to only have appointments in the mornings and not to do more than one major task a day.

I have travelled the world in the last few years since my husband retired and I have only had problems with time changes as they muck up my tablet regime. One time I got so jet lagged that I had trouble swallowing and my legs started shaking. Still it was worth it to go to other places in the world and see sights you can only dream of instead of just staying at home feeling sorry for yourself and moping! I also have other health problems, osteoarthritis, osteoporosis, high blood pressure & asthma. Thankfully the medications I take for them don’t interfere with the Mestinon® of which I take [4] 60mg during the day [every 3 hours] and 180mg Mestinon Timespan® at night, I also take Kaluril® tablets each day to retain potassium to prevent leg cramps.

I hope my story has been of benefit to others who still struggle to be diagnosed with Myasthenia Gravis – don’t give up and don’t let the doctors’ brow-beat you either! Keep at them.