Myasthenia Gravis and Me...
I’m a 40 year old male and was diagnosed with MG this year. Looking back on it, the symptoms started appearing in October of last year, but they were subtle and attributed to simple fatigue. At the time, I was pulling as much overtime as my company would give me as we were trying to save money for a trip to Disney World for March Break 2008. At the end of 14-hour shifts, my mouth would garble on me… I call it marble-mouth as it was like trying to talk with a half dozen marbles in your mouth. After a good sleep, this would be all cleared up and everything would be normal until the end of the next long shift. I went through October and November of 2007 like this without thinking anything of it. Around the end of December, I noticed that the marble mouth would be quite severe when drinking Christmas cheer; again, easily attributed to fatigue and the cheer so I did not think anything of it.
In January and February, my marble mouth was becoming persistent. I’d have difficulty speaking at the end of my shift whether or not it was a long one. I started having difficulties swallowing around this time, choking on anything that was too long (spaghetti noodles, string bean pod strings etc.) I have a bad habit of watching TV while I eat and I figured I was just not paying attention to what I was doing; trying to swallow food that I’d not chewed sufficiently. I did notice that I was getting full or tired of eating before I finished my meals. I thought this was a great thing as I had planned on losing weight this year and it was fairly easy at this stage. I was full, but not stuffing as much food into me as I had been previously.
March break arrived, and we headed to Disney as planned. My mother in law thought the marble mouth may be a throat infection and advised a salt water gargle which did seem to help a bit. Now, we live in Atlantic Canada, in March our average temperature is in the negative teens (Celsius). Florida was running plus mid 20’s when we were there. A massive swing in temperature can aggravate MG and it did mine. My marble mouth was as bad as ever, swallowing was difficult but the food was very enjoyable (I ate what I could) and I developed ptsosis (a drooping of the eyelid) commonly referred to as “pirate eye”. We joked about me falling apart but did not let it slow us down. The trip to Disney was a very enjoyable time. As soon as we were back home, my pirate eye disappeared on it’s own. Frequently intermittent marble mouth and swallowing issues persisted.
Concerned about infection, I did go to an after hours clinic in my hometown to explain my symptoms and see if there was anything obviously wrong with me. The doctor there said no to infection and referred me to an ear/nose/throat specialist and an esophageal specialist to see if they could figure it out.
At the end of March, I finally got to realize the next step on my career ladder. I’d been trying to get to be a site lead for quite some time and they sent me to two new customers who were coming on board. The site leads go to new customers’ sites and provide hands-on assistance to make everything go smoothly as the customer joins our service. I started with a customer in the San Francisco Bay area and the only symptom that showed up while I was there was a bit of the marble mouth; this was easily hidden as I had lots of hand-on stuff that I needed to do and did not need to speak with anybody there very much. From San Francisco, I went to another customer in Tempe Arizona. Pirate eye came back with a vengeance. I told them that my contact had dried up on me and aggravated the eye a bit. Marble mouth was not an issue as I was working in their building, basically on my own, over the weekend and did not have to speak with anybody as I took care of my thing making sure everything would be ready for Monday morning.
Returning home through Toronto, I ran into some old co-workers who work for my brother’s business. I did say hi to them and spoke as best I could, but I’m sure they figured I was completely sloshed. Pirate eye, speaking like I had a mouth full of marbles, I was a mess.
When I got back home from this business trip, my pirate eye did not go away like it had after Disney. The marble mouth was persistent and no longer intermittent. Swallowing was very difficult. My mother in law, who was a nurse, put things together and thought that I may have had a stroke. This was quite possible given the state I was in. My wife and I went into the ER to find out. They were very quick to look after me and got me in for a CAT scan right away. They ran a bunch of other tests and ended up ruling out stroke. One of the tests they did was quite telling of how badly I was affected… the doctor tested my gag reflex placing a tongue depressor on my throat - I could not feel it at all and had absolutely no gag reflex. My appointment with the ear/nose/throat specialist was up-coming, and we’d ruled out stroke with the CAT scans etc so ER doctor left it to the specialist and we went home.
Internet research into symptoms was pointing at a particularly nasty cancer of saliva glands with a very short life expectancy. Trying hard to stay positive and not let these ideas permeate my thoughts, I left diagnosis to my ENT specialist.
The ENT specialist ran further tests and saw that my left vocal chord was indeed partially paralyzed. He reviewed the CAT scan and determined that they had not gone far enough down my chest for him to see the full extent of the nerves that would be causing this. He ordered another CAT with contrast dye. This revealed masses in my chest at lymph nodes - he suspected lymphoma. There is a family history so this was quite likely. He figured one of the masses was pulling on the nerve that controls the left side of my throat.
The ENT specialist sent me to a thoracic surgeon to have biopsies done. The thoracic surgeon reviewed the CAT scan and my symptoms and immediately diagnosed me. He stated that the ENT was mistaken and that there is no pulling on the nerve going on. He referred me to the neurologist here to find out from the neurologist how we were going to proceed with the mass on my thymus. He also sent me for a series of blood tests including one for the antibody that causes MG. Colleen didn’t think much of the thoracic surgeon at first; he was “cold”. I felt I’d rather he be right than comforting. He was confident and efficient and actually had an answer for what was happening to me. Of course, as soon as I got home, I hit the Internet and started researching what MG is and everything clicked. When Colleen read this stuff, she quickly came around to agreeing that the thoracic surgeon really did seem to get it.
The neurologist sent me for an orbital CAT scan and did some MG tests. He confirmed the thoracic surgeon’s diagnosis. We discussed what the treatment options were, his immediate concern was getting the mass out of my chest and removing the thymus at the same time. He felt that my symptoms were still light enough that we were not going to start any medication until post surgery at the earliest. I was bounced back to the Thoracic surgeon and surgery was scheduled for the next week.
On the day following my 40th birthday, I went in and had a full-length transsternal thymectomy. I was in hospital for 4 days of recovery for this and then home to finish up my recovery. It hurt at night, but not so much during the daytime. I had codeine to help with the pain at night and within a week I didn’t need that either.
I quickly recovered from the thymectomy, got into walking and got my strength back. I was comfortably walking 5-7 km per day, getting stronger and starting to eat better. I was still not eating well yet, but was eating better.
Six weeks after the thymectomy, I returned to work where they put me in light duties where I don’t have to interact with customers much and they could float the schedule for me to have an optimal shift without interrupting the work that needs to be done.
My reports came back from the results of the biopsies done during the thymectomy and the blood test for the antibodies. The blood test confirmed the diagnosis and the biopsies of a few lymph nodes came back clean. The mass on my thymus was confirmed to be a thymoma with microscopic protrusion through the membrane wall. The mass was very large at 9cm across and my Thoracic surgeon told me he’d be surprised if there were no protrusion at that size. He passed the report onto the oncology department to find out what they recommend. Thymomas are very rare, but the risk of recurrence is very high if they are not completely removed. So, I met with my oncologist to schedule radiation therapy and plan that out. He highly recommended that I be on medication for the myasthenia prior to starting radiation as it would wear me out and severely aggravate the condition. I managed to get in to see my neurologist and get put on Mestinon (60 mg 3x per day) and this was a wonder drug for me. Within 20 minutes of taking a pill, I could eat. My recovery seemed well on its way. With a bit of Mestinon I could enjoy meals; I was walking and getting into great shape.
On my Oncologists recommendation, I went back out on short-term disability at the beginning of August. This was a few weeks prior to starting my radiation therapy but he wanted me well rested so I’d be up to the rigors of the radiation damage. I’m very glad I took this advice. I had thought of working through the therapy when I first heard I had to have it done. In hindsight, there is no way I could have done so. By the end of the first week I was “tired”. By the end of the second I was dragging my body by shear force of will to move it I was so exhausted. Even with Mesthinon, I was not able to eat easily any longer and it became a struggle to get food into me… there was a lot of supplementary Ensure, Boost and Carnation Instant Breakfast in my meals and still I continued to lose weight.
At week three of my five-week radiation therapy, I caught a cold. This was very bad as it increased my fatigue. We tried to push it through, doing weeks three and four but at that point I could not carry on. My Oncologist gave me a week off from therapy so I could just rest. He gave me antibiotics to try to help fight the bug off. They were unsuccessful but after a week off, I was able to continue and push it through to the end.
I’m currently dealing with side effects of the radiation therapy. Given the location of the cancer that was removed, and the nature of radiation therapy, I had radiation burns on my esophagus, lungs, chest and back. The burns on my chest and back were like sunburns and they’ve completely cleared up. The burns on my esophagus were a common condition and easily medicated with a product they call “magic mouthwash”. This coats the esophagus and makes swallowing easier. The burns on my lungs are another story. Some alveoli and bronchial tubes collapsed due to the burns; the cold I had developed into pneumonia in these damaged areas. The pneumonia has since severely aggravated my Myasthenia. I have been put on prednisone for the damage to my lungs. A short-term run of steroids to fix that damage is common treatment for this.
As I write this, I am in hospital for this aggravation to the Myasthenia. They have fixed up the pneumonia and after much struggle my neurologist came up to see me and got me on plasmapheresis. A five day run of that combined with an increase in my mestinon dose has me once again well on my way to recovery.
In January and February, my marble mouth was becoming persistent. I’d have difficulty speaking at the end of my shift whether or not it was a long one. I started having difficulties swallowing around this time, choking on anything that was too long (spaghetti noodles, string bean pod strings etc.) I have a bad habit of watching TV while I eat and I figured I was just not paying attention to what I was doing; trying to swallow food that I’d not chewed sufficiently. I did notice that I was getting full or tired of eating before I finished my meals. I thought this was a great thing as I had planned on losing weight this year and it was fairly easy at this stage. I was full, but not stuffing as much food into me as I had been previously.
March break arrived, and we headed to Disney as planned. My mother in law thought the marble mouth may be a throat infection and advised a salt water gargle which did seem to help a bit. Now, we live in Atlantic Canada, in March our average temperature is in the negative teens (Celsius). Florida was running plus mid 20’s when we were there. A massive swing in temperature can aggravate MG and it did mine. My marble mouth was as bad as ever, swallowing was difficult but the food was very enjoyable (I ate what I could) and I developed ptsosis (a drooping of the eyelid) commonly referred to as “pirate eye”. We joked about me falling apart but did not let it slow us down. The trip to Disney was a very enjoyable time. As soon as we were back home, my pirate eye disappeared on it’s own. Frequently intermittent marble mouth and swallowing issues persisted.
Concerned about infection, I did go to an after hours clinic in my hometown to explain my symptoms and see if there was anything obviously wrong with me. The doctor there said no to infection and referred me to an ear/nose/throat specialist and an esophageal specialist to see if they could figure it out.
At the end of March, I finally got to realize the next step on my career ladder. I’d been trying to get to be a site lead for quite some time and they sent me to two new customers who were coming on board. The site leads go to new customers’ sites and provide hands-on assistance to make everything go smoothly as the customer joins our service. I started with a customer in the San Francisco Bay area and the only symptom that showed up while I was there was a bit of the marble mouth; this was easily hidden as I had lots of hand-on stuff that I needed to do and did not need to speak with anybody there very much. From San Francisco, I went to another customer in Tempe Arizona. Pirate eye came back with a vengeance. I told them that my contact had dried up on me and aggravated the eye a bit. Marble mouth was not an issue as I was working in their building, basically on my own, over the weekend and did not have to speak with anybody as I took care of my thing making sure everything would be ready for Monday morning.
Returning home through Toronto, I ran into some old co-workers who work for my brother’s business. I did say hi to them and spoke as best I could, but I’m sure they figured I was completely sloshed. Pirate eye, speaking like I had a mouth full of marbles, I was a mess.
When I got back home from this business trip, my pirate eye did not go away like it had after Disney. The marble mouth was persistent and no longer intermittent. Swallowing was very difficult. My mother in law, who was a nurse, put things together and thought that I may have had a stroke. This was quite possible given the state I was in. My wife and I went into the ER to find out. They were very quick to look after me and got me in for a CAT scan right away. They ran a bunch of other tests and ended up ruling out stroke. One of the tests they did was quite telling of how badly I was affected… the doctor tested my gag reflex placing a tongue depressor on my throat - I could not feel it at all and had absolutely no gag reflex. My appointment with the ear/nose/throat specialist was up-coming, and we’d ruled out stroke with the CAT scans etc so ER doctor left it to the specialist and we went home.
Internet research into symptoms was pointing at a particularly nasty cancer of saliva glands with a very short life expectancy. Trying hard to stay positive and not let these ideas permeate my thoughts, I left diagnosis to my ENT specialist.
The ENT specialist ran further tests and saw that my left vocal chord was indeed partially paralyzed. He reviewed the CAT scan and determined that they had not gone far enough down my chest for him to see the full extent of the nerves that would be causing this. He ordered another CAT with contrast dye. This revealed masses in my chest at lymph nodes - he suspected lymphoma. There is a family history so this was quite likely. He figured one of the masses was pulling on the nerve that controls the left side of my throat.
The ENT specialist sent me to a thoracic surgeon to have biopsies done. The thoracic surgeon reviewed the CAT scan and my symptoms and immediately diagnosed me. He stated that the ENT was mistaken and that there is no pulling on the nerve going on. He referred me to the neurologist here to find out from the neurologist how we were going to proceed with the mass on my thymus. He also sent me for a series of blood tests including one for the antibody that causes MG. Colleen didn’t think much of the thoracic surgeon at first; he was “cold”. I felt I’d rather he be right than comforting. He was confident and efficient and actually had an answer for what was happening to me. Of course, as soon as I got home, I hit the Internet and started researching what MG is and everything clicked. When Colleen read this stuff, she quickly came around to agreeing that the thoracic surgeon really did seem to get it.
The neurologist sent me for an orbital CAT scan and did some MG tests. He confirmed the thoracic surgeon’s diagnosis. We discussed what the treatment options were, his immediate concern was getting the mass out of my chest and removing the thymus at the same time. He felt that my symptoms were still light enough that we were not going to start any medication until post surgery at the earliest. I was bounced back to the Thoracic surgeon and surgery was scheduled for the next week.
On the day following my 40th birthday, I went in and had a full-length transsternal thymectomy. I was in hospital for 4 days of recovery for this and then home to finish up my recovery. It hurt at night, but not so much during the daytime. I had codeine to help with the pain at night and within a week I didn’t need that either.
I quickly recovered from the thymectomy, got into walking and got my strength back. I was comfortably walking 5-7 km per day, getting stronger and starting to eat better. I was still not eating well yet, but was eating better.
Six weeks after the thymectomy, I returned to work where they put me in light duties where I don’t have to interact with customers much and they could float the schedule for me to have an optimal shift without interrupting the work that needs to be done.
My reports came back from the results of the biopsies done during the thymectomy and the blood test for the antibodies. The blood test confirmed the diagnosis and the biopsies of a few lymph nodes came back clean. The mass on my thymus was confirmed to be a thymoma with microscopic protrusion through the membrane wall. The mass was very large at 9cm across and my Thoracic surgeon told me he’d be surprised if there were no protrusion at that size. He passed the report onto the oncology department to find out what they recommend. Thymomas are very rare, but the risk of recurrence is very high if they are not completely removed. So, I met with my oncologist to schedule radiation therapy and plan that out. He highly recommended that I be on medication for the myasthenia prior to starting radiation as it would wear me out and severely aggravate the condition. I managed to get in to see my neurologist and get put on Mestinon (60 mg 3x per day) and this was a wonder drug for me. Within 20 minutes of taking a pill, I could eat. My recovery seemed well on its way. With a bit of Mestinon I could enjoy meals; I was walking and getting into great shape.
On my Oncologists recommendation, I went back out on short-term disability at the beginning of August. This was a few weeks prior to starting my radiation therapy but he wanted me well rested so I’d be up to the rigors of the radiation damage. I’m very glad I took this advice. I had thought of working through the therapy when I first heard I had to have it done. In hindsight, there is no way I could have done so. By the end of the first week I was “tired”. By the end of the second I was dragging my body by shear force of will to move it I was so exhausted. Even with Mesthinon, I was not able to eat easily any longer and it became a struggle to get food into me… there was a lot of supplementary Ensure, Boost and Carnation Instant Breakfast in my meals and still I continued to lose weight.
At week three of my five-week radiation therapy, I caught a cold. This was very bad as it increased my fatigue. We tried to push it through, doing weeks three and four but at that point I could not carry on. My Oncologist gave me a week off from therapy so I could just rest. He gave me antibiotics to try to help fight the bug off. They were unsuccessful but after a week off, I was able to continue and push it through to the end.
I’m currently dealing with side effects of the radiation therapy. Given the location of the cancer that was removed, and the nature of radiation therapy, I had radiation burns on my esophagus, lungs, chest and back. The burns on my chest and back were like sunburns and they’ve completely cleared up. The burns on my esophagus were a common condition and easily medicated with a product they call “magic mouthwash”. This coats the esophagus and makes swallowing easier. The burns on my lungs are another story. Some alveoli and bronchial tubes collapsed due to the burns; the cold I had developed into pneumonia in these damaged areas. The pneumonia has since severely aggravated my Myasthenia. I have been put on prednisone for the damage to my lungs. A short-term run of steroids to fix that damage is common treatment for this.
As I write this, I am in hospital for this aggravation to the Myasthenia. They have fixed up the pneumonia and after much struggle my neurologist came up to see me and got me on plasmapheresis. A five day run of that combined with an increase in my mestinon dose has me once again well on my way to recovery.