Myasthenia gravis: "When I understood what I was dealing with, the remission began"
Published 18 Jul 2022 • By Andrea Barcia
José Enrique is suffering with myasthenia gravis. About forty years ago, he started to feel the first symptoms of the disease. After numerous misdiagnoses and hospital admissions, he finally found a specialist who discovered the source of his complaints. Since then, thanks to effective treatments, alternative medicines and his constant struggle, José Enrique has managed to recover. He is now in remission, and no longer takes medication.
He now opens up about his journey with the disease here on Carenity.
Read his story below!
Hello José Enrique, thank you for having accepted to share your story with us here on Carenity.
First of all, could you please tell us more about yourself?
My name is José Enrique, I come from a large family: three sisters and two brothers. My mother is no longer with us and my father is about ninety-three years old.
I live in San José, the capital of Costa Rica, a small country in Central America. I am seventy-two years old, retired and my family consists of my wife, four children - all grown up - and a grandson, who is the apple of our eyes.
I love reading, writing and good music: I used to be a member of a choir and this gave me the opportunity to get to know other countries and cultures through music. I also like sports, especially football, which I played for several years. As far as my professional life is concerned, I no longer work as a lawyer and only provide small consultations when asked, more for friendship than for money - I worked for some years as a civil servant, specialising in the collection of customs duties, and then was part of several private companies also specialising in customs and international shipping.
In 1977, I received an OAS scholarship for an internship in Spain, where I spent time at the Official Customs School learning the new customs techniques that were to be implemented in our country at that time.
How long have you been suffering with myasthenia gravis? What were the first signs of the disease? What prompted you to see a doctor? How many specialists did you see and what exams did you have to undergo before diagnosis?
There would be enough to write a book, but I will try to summarise!
I have actually suffered from myasthenia gravis for about forty years. As I said, I was a member of a choir and a sportsman, and it was in these areas that the first signs appeared... hardly noticeable and therefore easy to confuse with other disorders.
It should be remembered that at the time, scientists were not very certain about the origin and the development of this disease and doctors tended to confuse it with other conditions. Even today, there is no agreement in medical science on the origin and treatment of these so-called 'rare' diseases.
Well, the physical signs of the disease started there, during sport sessions: my physical abilities gradually deteriorated - at first I justified it by saying that I was getting old, etc. At the same time, my performance at work was starting to get worse. I began to notice that I had problems writing on forms with multiple carbon copies that were not quite clear, due to weakness in my fingers. My studies at university also suffered, as I found it difficult to concentrate on reading, my vision would become distorted and doubled at times. As for singing, at first my voice wasn't affected, but my legs began to show a strange weakness and wobble when I climbed steps or platforms.
As you can imagine, this all went from minor to major in the space of a few years, causing a lot of uncertainty and stress which eventually made the problem worse.
From a medical point of view, the situation has not improved. In Costa Rica, more or less since 1941, citizens are entitled to social security. However, private medical care has always existed and I started to address the problem from both sides.
The private doctor who treated me said it was probably a nervous breakdown due to the hectic life I was leading. He prescribed a course of Diazepam which, paradoxically, we eventually realised, was the least suitable for myasthenia gravis. It was also a period of medical uncertainty.
Years passed and, although the disease was not openly declared, its symptoms increased: tired and weak legs and arms, double vision, swallowing problems, drooping eyelids... and a growing emotional distress. And the recurring question:
"What is happening to me?"
At the time, there was an experienced and altruistic doctor who charged barely nothing for his appointments, Dr. Rodrigo Gutiérrez, to whom I turned in despair. And it was he who saw what many others could not: he detected a neurological problem in my body.
After a pleasant chat with my wife and me and a neurological physical examination, he sent me to the pharmacy with a prescription for a drug called Neostigmine.
It hit the spot!
At the next appointment, after listening to my story about what was happening to my body after taking this medication, he gave me his opinion: "What you have is called myasthenia gravis. It is a disease of the immune system for which there is no known treatment and for which you need to see a neurologist." That was in 1979.
In 1980 I was treated by trauma doctors and one of them, in his private practice, did an electromyography and determined that there was indeed muscle weakness in my body. But his opinion was more oriented towards the physical trauma part and he prescribed me to do a series of exercises to strengthen my muscles. Naturally, they didn't work.
That same year, on the advice of Dr Gutiérrez, a neurologist who worked both in the private and public sector, admitted me to a social security hospital to try out a 'new' drug on me, which I think was called something like Synacthen Depot. It didn't work and nearly killed me, as the symptoms of myasthenia increased and I became very ill - at that time, in addition to neostigmine, I was also taking large amounts of cortisone, which I believe was the treatment that saved my life.
Later I was treated by another neurologist, Dr Enrique Hernandez, who agreed from the start that this was myasthenia gravis and that to treat it I needed a thymectomy (surgery to remove the thymus) to stop the damage the thymus was causing to my body. I was admitted to another social security hospital and underwent a chest operation. I was found to have a large thymoma and my thymus was removed. It is important to note that I was not very sure whether I should have this operation and the head surgeon at the hospital 'motivated' me by telling me that if I did not have it, the likelihood of me dying quickly was very high, and he even warned me that there was a 60% chance that I would not come out of the operation alive - nowadays it is not necessary to open your chest to perform this operation, but at the time it was a very dangerous procedure.
There was some improvement afterwards, but the disease soon returned and I was only maintained on neostigmine bromide, and doses of cortisone, which depended on how weak I was at any given time.
I'm going to jump back in time, but as you can understand, in those time frames, things went one way or the other, because life is like that, a continuous back and forth of beginnings and endings.
I stepped into the year 2010 with a number of work and family responsibilities and with serious health problems, as my illness was getting worse.
I digress to comment on one aspect that I think is important to highlight. Although medical literature indicates that in many cases myasthenia is controlled by adequate treatment and the patient can lead a relatively normal life, this is only partly true because, in my view, although drugs do have a temporary effect on the body, this mental and emotional wear and tear caused by not being able to look after oneself and by constantly being confronted with a situation in which uncertainty takes precedence over many other things, results in emotional after-effects that develop dramatically, directly affecting the body. And this is not only true for people with myasthenia gravis, but also for people with other diseases involving the immune system. It occurs when the symptoms become too difficult to detect and treat.
Coming back to 2010, as I told you, my weakness was very significant and it was only with the above-mentioned treatment that I was able to more or less cope. Once, at the end of 2009 I think, in a shopping centre car park, I tripped over one of the small bars used to park cars. I made a brutal fall, due to all the weakness caused by myasthenia, and had cuts and bruises all over my face and body. I was treated for physical trauma, but the real damage was not revealed until several months later, when I was admitted to hospital with severe internal bleeding that once again brought me to the brink of death.
It is difficult to summarise what happened there, but I spent 22 days in intensive care, some of them in a coma. I had several operations, one of which was the removal of my spleen. When, almost miraculously, I managed to leave the hospital alive, I weighed less than fifty kilos, I could not walk or talk, and eating was very difficult. In addition to anaemia caused by blood loss, myasthenia was also taking its toll. There were treatments including twelve sessions of plasmapheresis - I had already been given gamma globulin - and later I had to do respiratory therapy, as being intubated for many days, my lungs had lost a lot of their capacity. I also had to have physiotherapy to "learn again" how to walk. To make matters worse, the prolonged bed rest caused thrombi in my legs and I had to undergo anticoagulation treatment. In short, it was a very difficult few days, months and years, but I survived.
In 2015, another event brought me to the brink of death. A food-borne bacteria attacked me and I ended up in a social security hospital again. Once again, following a myasthenic crisis, I found myself in intensive care, in a coma, intubated and heavily medicated with plasmapheresis and drugs for myasthenia gravis, which was the real enemy to beat. As if that wasn't enough, another bacteria, this time from the hospital, took advantage of my weak immune system and put my life at risk. Eventually, rather badly beaten, I managed to get out of this and started to rebuild my life.
I digress again to point out that, as the drug advertisements say, "every drug has side effects". Many drugs had their side effects: cortisone caused water retention, which in turn caused swelling of the body. I also had to have a cataract operation and the ophthalmologist who treated me always suspected that I could develop glaucoma at any time. Neostigmine, in high doses and under certain conditions, produces quite strong gastric spasms and, as I said, after one of my hospitalisations I had to take blood thinners because of the production of thrombus in my veins following prolonged bed rest, with all the risks that this type of medication entails.
The saying that what doesn't cure you... can kill you can be very true.
The next time period is more pleasant to relate, as it was during the last six years, until the start of the pandemic, that my life began to take a turn towards remission.
What was your reaction when you were told about your diagnosis? Did you receive all the information you needed to get a good understanding of the disease?
The answer to the previous question contains some information about this.
Diagnosis was never easy and it was only when Dr Gutiérrez was right about what was wrong with me that I could get more or less reliable information. Moreover, at that time there was no access to information compared to today and it was very difficult to get it. Add to this the fact that doctors were not very good at giving explanations, especially in public hospitals, and you can understand the uncertainty that resulted from all this.
I came to understand the disease as such, more or less, many years later, by doing research, asking questions, talking to other patients. I think when I understood what I was dealing with, the remission began. But it took many years, many years of suffering.
What symptoms of myasthenia gravis have you experienced? Have they affected your daily life?
By doing my research and talking to other sufferers, I discovered that symptoms vary from person to person. Generally, the muscles in the arms and legs are the first to be affected. This is followed by the muscles that support the eyelids and those that operate our swallowing and speaking processes.
There is general weakness which may decrease with rest. Hot and humid climate can be very tiring. In my particular case, the neurologist was struck by the fact that I woke up very poorly after a night's rest, which was inexplicable to him.
Myasthenia gravis was indeed disabling to my daily life. It had to be that way, because physical energy is essential to go about our daily activities. It certainly does not function in the same way when our strength fails us and it takes time to learn to live with a considerably reduced life energy resources. The proof of this is my university studies, which I could not finish when I wanted because of the physical, mental and emotional limitations I was trapped in. I had to give up important positions because as a worker I was no longer up to the job, especially at the professional levels where I could be employed, which resulted in a very difficult financial situation for my family. And to make matters worse, the illness made me give up almost everything I liked as a hobby: singing, sports, reading and writing. These were very hard blows, from which I am still partly recovering.
Did you have to adapt your daily life to your disease?
As I said, I had to reinvent myself in almost every aspect of my life. Especially when myasthenic attacks left significant after-effects, such as loss of physical mobility, impaired breathing, sight or speech, among others. If I didn't adapt, I succumbed - it was as simple as that.
Are you currently in remission?
A neurologist once told me that with this type of disease, the patient may never come back to the clinic. This, he told me, could be due to the fact that he has been cured... or that he has died.
This was not very hopeful, but I for one tried to be on the side of the survivors.
When reading medical literature on this disease, almost everywhere there were short remarks about the possibility of remission. None of the books I have read, however, say how, when or why this remission occurs. So it is a small hope without much scientific support.
I will try to explain my case based on what happened to me and what is happening to me now:
Once myasthenia gravis is correctly diagnosed, the life of the myasthenic patient becomes quite ordinary. Medication must be taken regularly and the patient must not to expose him or herself to situations that could lead to a life-threatening crisis.
For example, appointments with my neurologist became less frequent, to the point that I only saw him about twice a year. He paid me a few visits and gave me a set of prescriptions for several months, which I had to pick up every month at the hospital pharmacy. And that was it! If I didn't come back, I was cured... or dead.
Some people are comfortable with this routine, but my temperament would not allow it. I wasn't resigned to spending the rest of my days depending on medication to get me halfway through this world. But what could I do? Allopathic medicine had reached its limits and the only thing it offered me was a chance to survive with this treatment.
I had to be grateful!
Many other patients with much more serious immune system disorders do not even have the chance to receive life-saving treatment and their health deteriorates rapidly until they succumb to the disease. But I was not satisfied.
At that point, I turned my attention away and started to do more research. I read a lot. I tried to understand what was causing my weakness. What are neurotransmitters? What is acetylcholine? What does it do? Why were the commands from my brain not reaching the nerve centres of my muscles properly, thus producing weakness? What is the function of neostigmine? And the main question: why wasn't my immune system responding as it should?
So something else had to be done. I saw other professionals: naturopaths, homeopaths, oriental medicine doctors, psychologists and nutritionists. I made major changes to my diet and started practicing meditation, or what psychology calls mindfulness. Acupuncture and chiropractic care did the trick and my lifestyle changed dramatically.
This whole process took several years, until in 2019, after seeing my neurologist, I stopped taking cortisone, the dose of which I had already been gradually reducing. I also kept the dosage of neostigmine to a minimum until I was encouraged to stop it completely.
Why did I make these decisions? Because energy was coming back into my body. Just as in previous years it had slowly left me, now it was slowly returning. And it felt so good!
I was able to function normally and even go for a few walks to a sports centre near my home. The Faculty of Physical Education at the University of Costa Rica created a fitness plan for older people and I signed up. For eight months, in 2021, I managed to do physical exercises assigned to me and even did something that seemed unthinkable, lifting small weights. Everything was coordinated by students and supervised by professional teachers.
My eldest daughter lives in Catalonia, in a beautiful village in the heart of the Catalan Pyrenees, La Seu d'Urgell. In the past, visiting her from my country was problematic, given the distance and the physical effort needed for the journey. But it was on the last trip we made in 2021 that we were able to confirm that I was free of the disease. We enjoyed travelling and seeing beautiful places without the burden of the disease.
It was clear to me that myasthenia, which had plagued me for so many years, was in remission. It was a bit hard to believe, but the signs my body was giving were irrefutable - even my family had a bit of trouble accepting it and that's easy to understand: what they had experienced on more than one occasion made them suspicious of my condition. The only way to get them to trust me is to take action, responsibly showing them that I can do things that were not possible for me up until recently.
What has been the impact of the disease on your personal and professional life?
The answer to this question is also in the summary of the first answer. There was a time when I was very emotionally unstable, depressed and blaming everything that was happening to me on the illness. I came to blame my severe asthenia for the loss of everything I considered important in my life: work relationships, social relationships, family relationships, physical attributes, financial status, in short, my world became very, very dark. Those were probably my worst years. And while it is true that illness was the perfect excuse to be unhappy, it was not the whole truth of my life. When I realised that the illness was not the cause but the effect of other choices I had made, the process of remission began, without me realising it.
"It takes a long time to ruin the magnificent instrument we have been given to travel on this planet with, our body; and likewise, by a simple rule of three, it takes a long time to restore it... and may not even be possible at all."
Have you been suffering with other conditions? If yes, which ones?
As I have already mentioned above, I had an IV thrombosis, cataracts in my eyes and suspected glaucoma, but all that is now behind me. Apart from the normal problems associated with my age, the only thing I'm "suffering" from at the moment is a steadily falling blood pressure, which the doctors say is nothing to worry about.
At the moment I am not on any drug treatment, but I have a lifestyle that I follow as a treatment: the diet my body needs - I have long since stopped eating red meat, fats, so-called junk food, including sodas, and am moving more and more towards becoming a vegetarian. I go for daily walks; I do meditation exercises, focusing a lot on breathing, that vital exercise of the human being, without which life is not possible. I also try to organise my spiritual life. I try to sleep at times that make my sleep truly restful, and music, that lady who eluded me for so many years, now accompanies me to give me peace. Also, I continue to read, for I do not forget what others have told me:
"When a doctor tells you that your disease is incurable, he is actually telling you that the way to cure it has not yet been found, but science never stops and at any moment the solution may appear".
Do you feel supported by your family and friends? Do they understand your condition?
It would take many more pages to talk about it, because the intervention and, above all, the understanding of the disease by the relatives are crucial for survival and recovery. It is very difficult for me to find the right sentences to express the feelings I have when I remember the role of my family in this whole process. They never gave up on me and always supported me. Of course, there have been many doubts and uncertainties, and many challenges, but their love for me has always been the main support that helped me overcome all the storms of this complicated disease.
Family is crucial during the acceptance process... and even more so during the recovery process.
What do you think about online patient communities like Carenity? Have you found the information and support you've been looking for here on the website?
They are also crucial!
Without information, the patient is like a ship adrift. Doctors don't share much information with their patients, and online health platforms such as Carenity allow us to inform ourselves and keep up to date with scientific developments in the medical field, which helps us a lot. In an age where almost uncensored information spreads on social media and turns into dangerous misinformation, platforms like Carenity give us peace of mind when it comes to getting accurate scientific information. In my case, it was my brother who introduced me to the site and since then I have been turning to it for information not only on myasthenia but also on other health problems and treatments. Thank you for your contribution and for the effort you make to keep us informed!
What advice would you give to other Carenity members suffering with myasthenia gravis?
"Everyone knows the size of the stone in their own shoe."
If there is one thing I have learned about this disease, it is that it is not very democratic and does not treat us all the same way. We chat via WhatsApp with some other people who suffer from this disease and it is curious how many situations, sometimes different, sometimes similar, myasthenic patients experience. A drug that is good for some is fatal for others. There is a lot of uncertainty and what works for me does not always work for others. We support each other and give each other advice, but the best advice we can give is to pay close attention to the symptoms so that they don't trigger a myasthenic attack. If the situation starts to get out of hand, go to a medical centre as soon as possible. This is our repeated advice. It is therefore very difficult to give other advice, although in more specific conversations we can talk about what we have done or are doing in a given health situation and thus help each other.
From this premise, I can say that my research has led me to draw my own conclusions about my specific case. For example, Nick Polizzi, head of a website called "The Sacred Science", recently published the following:
"Let's be clear: you do not have an autoimmune system. The immune system automatically attacks its own cells when there is an imbalance in the body." Johns Hopkins makes it clear: "An autoimmune disease occurs when the body's natural defense system is unable to distinguish its own cells from foreign cells."
I discovered this information a few years ago and it became my starting point for trying to understand the disease that was afflicting me. However, that was only part of the equation, the other thing to understand was why this was happening in my body, and even that took me a long time to realise.
I had to stop looking outwards and start looking inwards. Gradually I discovered that if I put not only my physical body in order, but also my mental and emotional "body", my health improved dramatically: this is where alternative medicine became very important.
Supported by allopathic medicine, because I never gave up on my treatment until I was totally sure that I was safe and could therefore get on with my life, leaving behind fear and uncertainty, I devoted more time to my inner self. And the results, in my case, are there for all to see.
So if I had to give one piece of advice, it would be the following: know who you're dealing with, it will be easier to fight it or, at least, control it. And don't let yourself live in the prison of one treatment. I am immensely grateful to medical science, for without it I would certainly not be in this world. But there were times when it could do nothing more for me.
Medical science itself tells us that at some point of its development, myasthenia gravis can go into remission. I have read that young women and children are more easily "abandoned" by the disease than other patients. Don't exclude yourself, don't think that everyone with this disease can be cured. Believe in medicine, follow the advice and the treatment plan given by your doctors and don't be discouraged if a myasthenic attack recurs, there will always be a moment of hope.
I have talked a lot about the disease and all the "bad" things it has done to me and there is no more room to tell you that remission is indeed possible. I am the living proof. It has been a long and often painful process, but it is possible. You cannot do it alone and attitude alone is not enough, you must put intention into your wishes and have the right people to support you through this journey.
Anything else you would like to add?
A big thank you to Carenity, especially Andrea, for this huge opportunity to share the story of my adventure. I apologise for the length of the answers to some of the questions, but I have a lot of information in my head and it is difficult to summarise it. If I can contribute in any other way, I will be happy to do so.
I'm here for Carenity and for anyone who needs a voice of encouragement or a shoulder to lean on. I can offer no less because that is what I have been given in abundance.
"A powerful mental shift occurs when we stop telling ourselves why something can't happen. When we can visualise a hoped-for future, we strengthen our belief that it is possible," says Joanna Macy.
Thank you Jose Enrique, for sharing your story with us!
Give it a "like" and share your thoughts and questions with the community in the comments below!
You will also like
Myasthenia gravis: "There are worse things in this world, this is what keeps me going."
18 May 2022 • 2 comments