One Disease, Different Experiences: Myasthenia Gravis
Myasthenia Gravis (MG) is a chronic autoimmune, neuromuscular disease that causes weakness in the skeletal muscles that are responsible for functions involving breathing and moving parts of the body, including the arms and legs. This is caused by a breakdown in the normal communication between nerves and muscles.
There's no cure for myasthenia gravis, but treatment can help relieve signs and symptoms, such as weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing. MG affects all ages, sex and ethnic groups. It is most common in young adult women under 40 and older men over 60.
Autoimmune myasthenia gravis has a prevalence of approximately 14-40 per 100,000 individuals in the United States. Reports indicate that the frequency of the disorder has appeared to increase over the last several decades. Reliable statistics are not available for Singapore or Asia.
Two ADSG members, Nicole Chin and Zuo Ann share their experiences with MG as part of our One Disease, Different Experiences feature for Autoimmune Diseases Awareness Month.
Please describe your journey from the onset of symptoms to diagnosis.
Nicole: MG is mainly muscle weakness, so I dismissed it as age, fatigue and poor physique since I was never the athletic type. For example, I could not open a bottle of mineral water, needed an hour of sleep after coming back from a vet visit or felt breathless after talking for quite a while. During dive trips, I would complain about strong currents when diving when everyone else didn’t feel anything and uncontrollable droopy eyelids. The symptoms went away after rest.
My antibodies had been elevated since 2014 and the rheumatologist had tested me for lupus but the results were negative. It was only when I suddenly had droopy eyelids while working on the PC that I could no longer attribute the symptoms to physical exertion. I told my mum and she asked me to see a neurologist immediately. Luckily, she pointed me in the right direction and I was diagnosed correctly right away.
Zuo Ann: When I was first diagnosed at 19, I thought I would get well after a major operation, but it did not happen. At the time, I didn't know that there is no cure for MG and I would need to be on long term medications, which led to more illnesses such as glaucoma and advanced osteoporosis. I went through a lot of mental and physical pain. My struggles resulted in a suicide attempt. However, I learned from those experiences. I managed to stay positive, courageous and to choose hope after I found my faith and a mentor in life
What was the treatment for your disease like?
Nicole: I was placed on Pyridostigmine and the dosage started increasing over the years from 30 mg 3 times a day to 60-90 mg 5 times a day as my ocular MG progressed to generalized MG. I was told 1/3 of MG patients’ conditions stabilised without progression, 1/3 went into remission and the remaining progressed to generalized MG. I was unfortunately the last 1/3. Luckily, I responded to Pyridostigmine (I was told 50% of MG patients didn't) and didn't have many side effects from Pyridostigmine - most had gastro issues and it was common to get diarrhoea. But by 2018, the treatment was not able to control my condition properly and I needed much rest frequently.
Chewing, swallowing was difficult and even walking a hundred metres left me breathless and tired. I started to experience double vision more frequently and by 2019, I had sold my car and given up driving. Travelling and even going out was exhausting; most of the time, by the time I had dressed up and stepped out of the door for the day, the double vision had set in. Even brushing my teeth, drawing my eyebrows and washing my hair was tiring; I couldn't lift my arms. Even though I resisted getting onto steroids because of the side effects, I eventually listened to the new TCM and neuro that I met in 2020 and started on Prednisolone. I had severe bloating issues, water retention and weight gain from the Prednisolone. The water retention was so severe one night that I could not walk as my legs were feeling too painful. The bloatedness made me feel like I could not breathe.
Zuo Ann: I have to have IVIG therapy and plasmapheresis. There are side effects such as painful headaches. To get the plasma treatment, I need to insert a catheter which is very painful and the plasmapheresis process is a killer.
Intravenous Immunoglobulin Therapy (IVIg)
This therapy can help people with weakened immune systems or other diseases fight off infections. IVIg gives you antibodies that your body is not making on its own so you can fight infections. In autoimmune diseases like lupus, the treatment may help your body raise low red-blood-cell counts. Not enough of these and you can become anaemic and feel very tired. IVIg helps stop the white blood cells of people with lupus from destroying their red blood cells.
Immunoglobulin is part of your blood’s plasma. It has antibodies in it to fight germs or disease. When people donate blood, this part can be separated out. Then it can be given to you through a vein in your arm, or IV. If you get IVIg, it can help strengthen your immune system so you can fight infections and stay healthy.
Liquid immunoglobulin is taken from the blood plasma of donors who are screened to make sure they are healthy. The plasma is tested for serious infections like hepatitis and AIDS. The plasma is purified before it's used for IVIg therapy.
During the therapy, prepared immunoglobulin is infused into your veins. A health care provider uses a needle to get into your vein. Then the medicine can flow from a bag through a tube into your arm. This takes about 2 to 4 hours.
Plasmapheresis is a process in which the liquid part of the blood, or plasma, is separated from the blood cells. Typically, the plasma is replaced with another solution such as saline or albumin, or the plasma is treated and then returned to your body.
If you’re sick, your plasma can contain antibodies that attack the immune system. A machine can be used to remove the affected plasma and replace it with good plasma or a plasma substitute. This is also known as plasma exchange. The process is similar to kidney dialysis.
How did you feel when you were learning to cope with your disease?
Nicole: It for sure affected my life physically. I stopped diving and driving, though I don't miss driving at all now that I am so used to using Grab and kind friends driving me around. I am not as independent as I would hesitate to go anywhere unfamiliar without someone with me, just in case I get lost or get exhausted. In the past, I would go anywhere as long as I have the street directory or GPS. What weighed on me most was when I lost my furkid to an acute kidney infection - I feel if I had been physically stronger, I would have been able to spot it and rush him to the vet earlier. I was ridden with guilt. We were very close as he rode with me daily to work for 6 years since I adopted hin. My best friend reminded me that I can't take care of the furkids well enough if I am not well enough myself. I still had other senior dogs which I have adopted before I was diagnosed with MG. Thus, I decided to take the steroids which I have resisted for so long and use other means, mainly TCM and Tuina to manage the side effects.
How are you coping with your disease now?
Nicole: I was already working mainly from home before covid hits and had already adjusted the working protocols to suit this arrangement so myself and our office didn't feel any much difference with covid. I learnt to delegate.
When I could not chew or swallow properly even water to take my meds with, every meal was a chore. But with steroids, I was able to eat and enjoy my food and this was very important to my mental well-being. I space out my outings in a week to ensure I am not exhausted. Instead of thinking that we can't do as much a person without MG, I choose to think that I am now learning to slow and smell the flowers instead of rushing by all the time.
What have you learned from having MG?
Nicole: I've read on many MG groups that MG patients have lost friends and even divorced because others just could not understand or adjust to we are going through. As I said, with MG, our lives tend to slow down so there may be friends or spouses who are unwilling to walk the same pace as us. But luckily for me, my friends rallied around me. When for instance, we meet for meals, they would cook or order something I could eat easily. I get driven around when we meet and some also took turns to accompany me to medical appointments. However, in terms of relationships, I don't have much confidence in it these days. Perhaps, it was easier for friends to adjust because we don't live or see each other day daily. But with the other half, they have to adjust to us permanently and some just do not understand or underestimate the effects of MG on us physically and mentally. I also became closer to my family as a result and became more focused. Because my energy is limited, I didn't want to waste time on people or activities which mattered little and started "decluttering".
Zuo Ann: I no longer ask "Why me?" but believe there is always a reason to everything. I learnt to accept and not compare with others. I won't be able to climb up the corporate leader as I can't take the stress and I won't be able to participate in most sports as I can't see well. It is challenging to find a partner as most prefer someone who is healthy and independent
What do you think is important to know about your disease?
Nicole: That our muscle weakness is real. It isn't imagined or that because we are not "pushing" ourselves hard enough. If we "push" ourselves a little more as some ignorant people might advise, we could go into an MG crisis which is life-threatening because our lungs cannot function anymore. It is vital in our case not to overexert.
Before anyone complains about their life, think about the things that you take for granted each day: eating, swallowing, brushing your teeth, drawing your eyebrows, washing your hair, opening a bottle of mineral water to drink when you are thirsty, holding a smile for a photo, walking the stairs or a couple of hundred meters, driving a car, pulling your shirt over your head, putting on your pants without falling over - all these that most people take for granted but we MG patients have to take medication on daily basis just to be able to do each day. And some of us don't even respond to medications anymore and daily activities like this are out of reach for some of us.
If you could give your pre-diagnosis self some advice, what would it be?
Nicole: If one specialist can't give you the answer, sort out another or even in another field. You could even google easily the symptoms to try getting pointed in the right direction. Many MG patients often get misdiagnosed because their symptoms often don't point them to a neurologist. Unlike most autoimmune disorders, ours are managed by neurologists rather than rheumatologists. And even some neurologists are not familiar with this condition.
If your blood work showed up any abnormalities, get it checked out immediately. Don't wait. My antibodies were elevated for 3 years before my TCM physician insisted I should get it checked out.
ZuoAnn: Though MG is incurable and I will need long term medication, it is possible to still lead a fruitful life. Do not procrastinate & seize each day.
What have you learned from having to cope with your disease?
Nicole: We are responsible for our own health, no one can take care of it for us or bear the pain for us. For us to cope with a disease, mental well-being plays a very important part. Do what takes for you to feel well mentally, and it would be much easier to cope with the disease physically. For instance, I would think being able to chew and swallow and having a good appetite would help all of us feel better tremendously.
Looking at the cup as half full rather than half empty is not just a cliche; it is something very important when coping with any disease and very easy to achieve. For instance, yes, I might have difficulties coping with daily activities if I miss my meds but I feel blessed I am born healthy and whole with properly functioning faculties. To cope with the weight gain and water retention brought on by the steroids, I started learning more about dressing for my body type, diets, exercises and picked up taiji. Finally, I learned to prepare for an early retirement especially if I am unable to work a full-time job anymore. I took up courses on investing. It became an opportunity to pick up new knowledge.
ZuoAnn: I learned not to be shy to ask for help and I have a wonderful family who will always be there for me.
What do you hope for in the future?
Nicole: Cures for all autoimmune disorders of course. I hope that my condition will not progress and that more government subsidies shall be provided for chronic conditions.
Zuo Ann: I hope the community can recognize that living with an autoimmune disease is costly, and we need as much financial assistance as other fully subsided conditions. I also hope the community can be educated on autoimmune diseases and understand that it is an invisible condition and we need to support it. I also hope to share my experiences to encourage others in similar situations.