Myasthenia came into our lives in 2004, I say ours because with a condition like this, your whole family is affected. Your world turns upside down and you don’t know where to turn. In my case it came out of nowhere, one minute I was super mum, a few months later I was lying in Intensive Care unable to do anything for myself. With my story I am going to be as honest as I can in the hope that if you are struggling with your M.G. and are thinking that you will never have a normal life again, I will prove you wrong. I hope my story will give hope to someone out there that may have just been diagnosed with M.G., I remember that feeling as if it was yesterday.
For someone who does not have M.G., can you imagine waking up one morning and finding that the only part of you that is working is your brain, that when you go to get out of bed, you cannot lift your head off the pillow, you can’t open your eyes, your limbs don’t do what they are supposed to do. You feel like your body has died but your mind is the only part of you that still works.
If you are lucky to be able to get out of bed, you are probably breathless at this stage, imagine trying to get dressed, you cannot lift your hand up to your mouth to brush your teeth, your hands won’t go up to your face to wash it, you can’t brush your hair, getting into the show is a no no, you have no power in your arms to lift it up to turn on the shower, yes you can get someone to do it for you, if your lucky, now your in the shower but you want the shower gel, it’s on the top shelf, how do you reach it, your arms won’t go up.
You get help getting out, now you want to get dressed, the bottom half you can manage because you do not have to lift your arms but how do you put on your top, you have no power in your arm….. try it some morning This may gives you a insight to the every minute, (I say every minute because a day in the life of someone with M.G. is too long to comprehend) struggles a person with M.G. has. Imagine what this is doing to the person with M.G., they feel useless, helpless, frustrated, upset, confused and more than likely very, very angry. With M.G. every case can vary, I happen to have a very difficult time.
In March 2004 I had my second daughter, Rachel. After a perfect pregnancy and birth I was walking on cloud nine after waiting for 17 years to have her. In July I started feeling tired but initially put this down to being an older mum second time around. (37) A few weeks later I noticed when I sat down to watch T.V., my vision wasn’t normal in that, I could see two t.v.’s one on top of the other. Not ignoring this I went to my doctor and she advised me to go to the Eye and Ear Hospital, which I did.
On examination I was told that there was nothing wrong with my eyes. Delighted with this news I went home, however, I noticed over the next few weeks that the double-vision continued and decided to return to the hospital. Again I was told nothing was wrong and was sent home.
While the double-vision continued erratically, I had no other signs of anything being wrong until the day I went out to the clothes line to hang up some clothes and found that I could not lift my arms up to hang the clothes on the line, I could lift them out of the basket but they would not go up past my waist. Obviously, I went into a state of shock, everything started going through my mind from, am I having a stroke to am I having a heart attack. Every other part of me was fine, it was just my arms that seemed to be affected. That day I just rested for a while, next day everything was fine.
Again, I put it down to being tired from the baby, however, by the end of the month, my arms started to weakened daily, in that I could not put dishes back up in their press, I found it difficult to hold up the hairdryer when blow-drying my hair. It got to the stage that I could not lift the baby spoon to feed the baby. My eyes were getting worse and my eyelids were now dropping. They would be fine in the morning but by nighttime they would be dropping.
Again not neglecting myself I went to my G.P. I was one of the lucky ones in that my G.P. is a young doctor and was aware of M.G. and also diagnosed me immediately. She made contact with the hospital to see how soon they would see me. I was given an appointment for November. By October my condition got progressively worse, everyday things were now a problem, I was getting breathless climbing up the stairs, I could no longer feed, wash or carry the baby.
In November I collapsed at home – my legs just basically went from under me and I could not get up, up to now it was my eyes, arms, and breathing that was affected. At times I noticed I had difficulty in swallowing meat etc. and at night I noticed that my speech would become slurred.
I was brought to hospital to A & E and again was fortunate that the consultant that I was due to see on Monday was on call that night. He came to see me and after carrying out varies visual examinations – these consisted of him checking to see how long I could hold up my arms, reflexes, what strength I had in my arms/legs – by pushing against his etc. and finally a Tensilon Test, the Tensilon test is done by injecting the drug Tensilon into a vein and watching for rapid improvement of strength, usually of eye muscles. Improvement in strength of speech may also be considered a positive test, following this test my eyes improved also immediately in that they were no longer drooping, he stated that I did in fact have M.G.
I am not going to go into what M.G. is as thanks to M.G.A. all of the information inrelation to this condition is clearly stated, thankfully in lay-mans terms. I was taken in and put on the all too familiar medication, Mestinon. After a week I was discharged home and told to continue taking the medication prescribed.
I lasted a week at home and again collapsed, my breathing was now very difficult, I had no strength in my arms, while I could carry out duties i.e. dress baby, give her a bath, once the job did not involve having to lift up my arms I was fine but lifting baby out of bath was impossible. My family who I had not informed of recent events had started to notice my slurring of words and my eyelids drooping.
I was re-admitted to hospital and had various further tests, Lumbar Puncture, lung biopsy etc, I went downhill dramatically. Unfortunately, with this condition everyone reacts differently to medication and at that time it was trial and error.
I was now getting constant chest infections; I had to receive physiotherapy to assist me in clearing my lungs as I was now not strong enough to do this by myself. My walk was badly affected and I now had great difficulty in showering, dressing, eating and my eyelids were now constantly drooped. To have a shower by myself would take about an hour as I would have to rest every few minutes as I was becoming breathless, I was unable to continue sometimes with the shower as my arms would just not work, by the time I would get back to the bed I was exhausted and then had the ordeal of trying to get dressed.
To say I was worried is an understatement. My greatest fear was for the baby at home, she was only four months old and I knew I was in for a long haul to say the least but also had to admit to myself that I might not get through this. My condition deteriorated day by day, my medication was increased, this now consisted of Mestinon which had gone from taking 2 twice daily to 2 every 3 hours, I was now on Nebulisers,, Imuran and Steriods.
My consultant recommended that he tried Plasma Exchange on me, this is where the Blood Transfusion Board comes in and basically connects you to a machine for 3 hours while your blood is being purified. Again some patients find that they get relief from the M.G. for weeks at a time but unfortunately with me it had not affect. This was done again on two more occasions but each time I did not notice any difference.
In December I was now on C Pap, this is a machine, which now assists me with my breathing. Initially, this was used intermittently during the day, however, mid December my breathing was becoming more difficult and I was moved to I.C.U.
This was one of my lowest points in that I could no longer do the simple thing of breathing on my own. The reality was the seriousness of the condition was now definitely kicking in and I was thinking that I might not be alive to have my 1st Christmas with the baby.
With M.G. age and other factors are taken into account as to how doctors treat your M.G. In my case due to my age and seriousness it was decided that I did require a Thymectomy, the operation to remove the Thymus Gland, which is the wobble little bugger of a gland that in most people shrivels up at puberty and is no longer any use, but in my case in a very small percentage of people it enlarges and causes M.G.
Unfortunately, for me the consultant that carried out the procedure of removing the Thymus Gland had retired and Tallaght Hospital no longer had anyone to carry out the operation.
As I was now weakening by the day it was coming apparent that the operation was now a matter of urgency. During my stay here, the team I was under carried out Bone Marrow Biopsy’s, Lung Biopsy’s, daily blood test, chest x-rays, cat scans. Luckily a aerial line was fitted, painful when getting put in but it saved you feeling like a pin cushion as they had to take blood twice daily to check your Blood Gas, this was to check the level of oxygen in your blood.
I was also fitted with a Canula, this was so that some of your medication can be given to you intravenously.
I stayed in ICU from December 11th 2004 to January 11th 2005.
On January 11th I was transferred to another hospital for the operation to be carried out as a surgeon there had agreed to carry out the operation. A surgeon from another hospital had come to see me but had stated that I was too weak and refused to do it.. At this stage my family were up the wall, they had made contact with Karen in M.G.A. and I can say that they can not praise her enough. They bombarded her with phone calls full of questions which she gladly answered and geared them towards the M.G. websites where they did further investigation themselves.
At this stage I had not seen my youngest daughter for 4 weeks as we thought it might be too stressful for her to see me wired up to all the machinery. I was at an all-time low, I knew things were bad and my thoughts were with the two girls at home. Tracey trying to do her Leaving Certificate, Rachel not knowing where her mam was gone.
At this stage I was unable to breath for very long without the C Pap so the journey between hospital was the longest ¾ of an hour that I every had.
On arrival I was sent to the High Dependency Unit as their ICU was full. I was put back on C Pap and prepped for the operation the following day – new aerial line, new canula, catatur fitted etc.
It was expected that following the operation I would be in ICU for 6 days, I was in ICU for 6 weeks, for 5 weeks of this I was on a ventilator – tubes goes from machine, down you oesophagus to your lungs and does your breathing for you.
In my case, it was discovered during the operation that the tumour had travelled and invaded my Vena Clava, therefore, constructive surgery had to be carried out on my heart as well as having the Thymus removed, saying that this was not the reason I was in ICU for so long.
Due to my M.G. my lungs had not operated on their own for months at this stage and when they took me off the ventilator after 3 days which is the norm for normal operation, my lung collapsed and I had to be re-ventilated. Several days later they tried again and I started having palpitations and was unable to breath for more that 30 seconds.
Therefore, I had to be re-ventilated again. This was one of my lowest point in that I honestly thought that I would never be able to breath again, lying there, while your mind is working as normal, probably in overdrive, but your whole body is unable to do anything for itself.
I was being fed intravenously, my medication was being given through tubes, I was unable to get out of bed, go to the toilet, sit up by myself. I couldn’t talk because the tubes were down your throat, I could not write down what I wanted to say because I had no muscular power in my hands, so basically you were unable to communicate how you were feeling, what you wanted etc.
February 2005 the ventilator was removed and I was now back on C Pap, not as severe as ventilator but still as restrictive, in that I couldn’t talk, eat, drink etc.
The medication I was on gave me constant diarrhoea; I was hallucinating every night and was unable to sleep for more that 4 hours per night. This left me exhausted; unfortunately, it took some time before they got me on the correct medicine and things started to slowly improve.
In addition to all the physical changes that were going on there was also the mental and personal issues to deal with, Tracey was doing her Mocks at school, Rachel I had not seen for two month, mentally you were trying to keep strong and believe in yourself that you would make it and you would return home to a somewhat normal life but boy it was hard.
Because of all of the wires attached to me, it was with great difficulty that I was eventually able to get out of bed, assisted by staff and sit on a chair for a few hours at a time, this was exhausting. I received physiotherapy each day, twice daily to help my lungs but also to build back strength in my legs and arms.
Over the weeks doctors had been lowering the strength of oxygen going into me from the machine, this was to try to get me to work my lungs harder to enable me to get off the machine, I felt that they were not listening to me when I told them they were moving to fast and unfortunately for me I proved them right.
During the first week of February the C Pap was removed and I was weaned off it over the next few days. I still had to be connected to it for sleeping but thankfully over a few days it was taken off for good, never to be seen again.
I then had to go through intense physiotherapy, I had not walked in over 6 weeks, simple things like drinking and eating were difficult as you had not eaten for so long, great for the figure but not so good for the body. After several days I was able to walk unassisted. The daily chores of shower etc. were still being done for me. Gradually, wires, tubes etc was being disconnected and 5 weeks following my operation I sat up in bed and had something to eat.
Eventually, I left ICU and was moved to High Dependency for two days and eventually to a normal ward two days later. The happiest day for me was when my husband brought in Rachel who was now 11 months, at this stage I had not seen her for nearly 3 months, again trying to prepare for her visit was difficult, I knew she would make strange not seeing me for so long, to say it was difficult was a understatement, it was pure torture as when came in she knew she recognised me but was very cautious, while I wanted to grab her and run away, I knew I had to tread lightly, this I did and on her second visit the following day something clicked with her and I took up where I left off, loving her like there was going to be no tomorrow.
I remained in hospital until February 15th and happily left the place to go home.
Because of the operation I was also on Warfarin for thinning the blood and this meant that I had to attend the Warfarin Clinic every Monday, I was so weak that I had to make a special arrangement with them that they would see me immediately as my immune system was suppressed and I was unable to sit for any period of time.
Progress at home was very slow, difficult as well as you were sitting/lying at home looking at what had to be done and not being able to do it.
Unfortunately, I was a regular visitor to Tallaght hospital over the next two years, I was in and out for monthly stays due to constant chest infections, which lead them to discover that I now had Bronchiatitis which is another chronic Respiratory condition due to me being on the breathing machines for so long. This again took its own time to control.
The M.G. was under control as long as I behaved myself, having laid low for so long I wanted to return to my normal self, do all the things I used to do, well its not possible, once you overdo things, the M.G. symptoms coming flying back and you have to learn to pace yourself. Rest is very important and you do have to work out a new routine for yourself.
I had monthly appointments in the hospital and gradually they started to wean me off some of the medication, the steroids being one of them. While they do wonders in keeping you going they do nothing for your appearance. I had gained 2 stone in weight, my face was twice the size that it normally was, my hair started falling out, I had steroid acne on my forehead, I sound lovely I know and I believe I was a bitch to live with but hey happy days I was alive. The hardest bit was looking in the mirror and not seeing ME, not only did you not feel like yourself, you didn’t look like yourself either, everyone telling you you look great and you know you look like****.
In June 2006 I had a bad chest infection, my M.G. was playing up in that my eyes were still dropping, arms were not doing what they normally would and finally my breathing went, an ambulance was called and I was rushed into hospital again. By the time I reached hospital which is 10 minutes away, I was unconscious. I was dealt with very quickly and put back on the ventilator. I had had a CRISIS. Thankfully, they got me back on track very quickly and two days later I was off the ventilator and put on my old friend the C Pap but again was off this within days. I did have a month in hospital as my eye was dropping badly. Thankfully I returned home and my eyelid eventually did lift.
Since that visit, I am happy to say that since June 2006 I have not had an overnight stay in any hospital. My M.G. is totally under control, in fact most of the time I would not know I have it at all. I do pace myself to a degree but more times than not I do push myself too hard. I have been sensible in that I have returned to work on a part-time basis, I’m back driving and doing all the things a mother has to do.
I’m delighted to say that my eldest daughter Tracey has just completed her Honours Degree in Social Care and my youngest, Rachel is now in 1st Class, both doing really well and glad their mum is back on track, even though I do drive them mad from time to time.
We have had a few very tough years but all along I was grateful that it was me that was challenged and not the kids, I prayed a lot, I must have had every Novena known to man said for me, I received holy water from everywhere possible, I had relics from every saint know stuck to me and I do believe someone finally listened to me.
One of the things that got me through all of this was taking each day at a time, if your having a really bad day, don’t think about how good you were yesterday, think about today as being a bad day but know that you can only be better be tomorrow, the good days will overtake the bad days…………
I have to say a big thank you to all my family and friends for their support, prayers, help and encouragement that they gave to me along the way, I know the war is not over yet but I’m winning and I feel that I am now in control of M.G., M.G. is not controlling me.
Especially to my mam, who I am convinced has special powers in those hands, she know what I mean and also my sister Helen, Rachel second mum (or Hellie as she is know to Rachel). Thank you to my girls for hanging in their and being so strong and for giving me the will to live.
Also to Karen in M.G.A., without her I don’t know where my family would have turned, she was able to provide us with so much information and help. While the M.G.A. is in England I feel it is imperative that we have branches in Ireland too. It is a great source of comfort to know that we here in Ireland can meet up with other people who has M.G. and this can not be arranged without Karen orchestrating the meeting.
In addition to this Karen keeps us informed of any updates regarding M.G. and does a lot of work in promoting awareness of this condition that to me is under diagnosed. I have not come across one person in the last 6 years that has heard of M.G. but hopefully by advertising, fundraising and promotional work the condition will become more easily recognised and people with M.G. will be more easily diagnosed.
I hope that my story not only gives you some insight as to what M.G. is, but that you also find it informative, I hope it gives you hope and belief in yourself that you can survive it and learn to live with it.
As one doctor said to me once, “Keep the chin up” – totally inappropriate as I couldn’t
hold me head up at the time with my M.G
This coming Spring of 2010 marks the 11th anniversary of my wife Anne’s, first encounter with Myasthenia Gravis and in the event that it might be of help to some one, I have written an account of the development and treatment of her condition over the intervening years.
As background information my wife was 70 years old in the spring of 1999 and in general good health. Anne had a bout of heart palpitations in 1976 and spent some time in the local hospital. She recovered quickly and apart from a minor recurrence some eight years later has had no further problems in that field being on a maintenance dose of Cordorone X since then. During April 1999, Anne began to experience intermittent double vision, just occasionally at first. Our doctor sent Anne for a series of tests, first to an optician who found nothing unusual in her eyes. Anne has worn glasses for reading most of her life. As the occurrence of double vision became more frequent especially when Anne was tired, our doctor sent her for a series of tests and scans to two consultants in different Dublin hospitals to ascertain if there was a growth near, or any damage to, the optic nerves. At this stage there was no indication of Anne’s eyelids drooping, in fact there never has been, in her case. Anne found that provided she covered one eye with an eye-patch, she was fine, and it didn’t matter which eye.
While awaiting some test results from the Dublin consultants, we went on holiday to our son and his family who lived just south of London. One evening Anne and I were out walking, and quite suddenly Anne’s speech became slurred and she found she was unable to form some of the words she wanted to say. Later that evening Anne’s speech improved, although she seemed to have developed a pronounced lisp. We wondered if she might have had a slight stroke. The next morning Anne’s speech was much better, even the lisp had disappeared. We visited our doctor when we got home, Ann’s speech problem had returned and was more severe than before, to such a degree that I had to do most of the talking for her. Her double vision was more persistent and she was beginning to have difficulty swallowing. Our doctor did not think it was a stroke and felt it was a nerve or muscular problem and started Anne on a course of steroids. In consultation with another of our sons, who lived in Dublin, he arranged an appointment with a heart consultant in a Dublin hospital just to eliminate the possibility of any stroke having occurred.
Unfortunately, we did not see the consultant himself, but a young doctor who was a member of the consultant’s team, who insisted on seeing Anne alone which was a pity, as Anne was not capable of making herself understood. He would not allow any of us to explain the situation to him. He diagnosed Anne as having suffered two minor strokes and said he would report to our own doctor in due course.
We returned to our own doctor who was not happy with the stroke diagnosis and arranged another visit to the heart consultant in Dublin. This time I was allowed to explain the symptoms and situation to a more senior member of the consultant’s team in particular the fact that her ability to swallow had deteriorated considerably. When I had finished, the doctor asked had we ever heard of Myasthenia Gravis. I said that we hadn’t and asked if it was some kind of plant to which Anne may have developed an allergy. He explained what myasthenia gravis was and then said he wanted to admit Anne to the hospital immediately for treatment. The neurology consultant took over Anne’s treatment and said he would have her condition under control in a few days. However he did not seem to grasp the fact that by now Anne was having great difficulty swallowing, and was coughing and choking when she tried to swallow anything. This meant that she was not ingesting the medication being given to her and over the next week her condition deteriorated rapidly as fluid etc collected in her lungs. Then at four o’clock one morning I was called to the hospital by my son who had stayed with her that night, as Anne had stopped breathing and had been revived twice by the doctors on duty. They explained to me that Anne was extremely weak and did I and my family want them to continue to resuscitate her. We asked them to try once more which they did and Anne stabilised a little bit. The doctors explained that Anne needed intensive care and that they had no beds available in their intensive unit. They would transport her using a mobile life support unit to Beaumont Hospital. This was done and for the next three weeks Anne was on life support and in a coma in the high intensive care unit while the neurologist, Dr. Norman Delanty and his team tried a number of treatments to try and save her. The only aspect of the initial treatment which I can remember is that they were carrying out a type of dialysis in an attempt to clear Anne’s blood of the myasthenia antibodies. After a number of sessions they had to stop as Anne was not strong enough to continue. The team switched to medication of steroids etc fed intravenously and slowly Anne recovered until some three weeks later she responded to my talking by squeezing my finger which was a great source of happiness to the medical team and to our family.
Two days later Anne regained consciousness and slowly over the next ten weeks the myasthenia was brought under control to such an extent that I was allowed to bring her home, on condition that we stayed within 3 hours journey of Beaumont hospital. As part of the treatment Anne’s immune system was depressed and we had to avoid crowds and any sources of infection as much as possible.
Dr. Delanty explained that Anne’s myasthenia seemed to be very aggressive and at the first sign of any symptoms recurring we should return immediately to the hospital. We were to return to the hospital for monthly checkups anyway and pay weekly visits to our GP. A list of Anne’s medication is included at the end of this account. Over a period of two years the steroid dosage was reduced with no recurrence of symptoms and for some weeks Anne was taken off the steroids altogether. Then in the summer of 2002 Anne woke one morning and was lisping again although she had no trouble with her vision. She was taken back into Beaumont and spent three weeks there until Dr. Delanty and his team stabilised Anne and settled her on a maintenance dose of steroids which she is on to this day. We have got to the stage now where Anne has regular checks with our GP and returns to Dr. Delanty once a year. During all of the treatment, Ann’s thyroid gland became slightly over active and she takes a small amount of neomercazole to counteract this. Thankfully Anne, now in her eighties, seems healthier and stronger than she has been for some years. We are grateful beyond words to Dr. Delanty and our own GP for enabling Anne to recover so well and allowing us to have a reasonably normal life. Anne still takes her medication and we avoid crowds and sources of infection as best we can and are very grateful for the extra time we have been given together.
We are very grateful for all the help and information we get from the MGA. We don’t feel so alone when we read about others with the same problems.