Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I would like to share my recent experiences dealing with severe respiratory distress, leading into a full MG crisis and near respiratory arrest (cardiac arrest had been called, I woke being bagged and being set up to be intubated). When I woke up, I was strong enough to talk and my blood gases good enough to avoid intubation. I was put back on my CPAP, as I had been before the crisis.
Leading up to my crisis I had already received five days of IVIG but still progressively got worse. My MG doctor at Mayo wanted to admit me and try Plex. My wonder wife drove me six hours to Mayo in severe respiratory distress. Yes, we were taking a big risk verses going to my local hospital, but it was the right call. I use a Peek Flow meter to measure my respiratory capacity verses the breathing test, which I have done myself and done by doing numerous neuro exams, including after admissions at Mayo. What is important with any of this test is to know you normal basis line. My breathing tests are normally a count of 30 and my Peek flow is 300. I should also note that I have asthma and COPD.
Upon hospital admission with respiratory distress you will normally get blood gases and regular pulmonary function test called NIF (negative inspiratory force) and FVC (forced vital capacity). During my admission my blood gases and pulmonary test were all normal and stayed normal for the next day. That did not mean I felt normal, I knew I was getting weaker and having more distress. I was receiving Plex and on my second day during my Plex treatment I had the new I was close to respiratory arrest and told my wife I wanted to avoid intubation if all possible. That morning my NIF was normal but my FVC had dropped from been dropping from my high of 2.9 to 0.7. My neuro team knew I was in distress so the came to treatment area where I was receiving my Plex. I had just finished the treatment and the nurse had moved me to the wheelchair to get me to my room. The little effort to move was too much. I remember the neuro team coming in at that time, just as I blacked out.
The lessons I learned from this experience. Important to share your personal knowledge of just how severe your MG symptoms and breathing difficulties are because they do not always match what the test and doctors findings are on exam. My doctors were very alert the morning of my crisis however I often got some puzzled looks or replies during some of my exams, especially by my respiratory therapists when I would max out the NIF test every time.
After I was discharged from Mayo I was only home for one day before I had to go to my local hospital due to atrial fib. I was in the hospital a week and discharged still with atrial fib due to issues with my MG. I neurologist seeing me had any idea about MG. I learned my local neruo doctor locally had stopped making hospital rounds. I had still been having some MG symptoms and on my second day upon discharge I was again having severe respiratory distress. The ER doctor pretty much followed my lead as to my knowledge of MG and treatment. I was fortunate that he went ahead and gave a bolus of sodium medol, which made a big difference. Sodium Medol 1 gm for three days was my rescue treatment at Mayo.
During that admission I was admitted to ICU for MG issues but the doctors seemed very unsure if my symptoms were MG due to my exams and test. I even had the pulmonary doctor tell me I had a anxiety attack. The neurologist on call did not even see me until after 24 hours.
I know I was having alot of anxiety but feel it along with severe other factors triggered my MG. I know my MG symptoms and shortness of breath and know I was having MG issues that morning.
I have several lessons that I learned from my three hospital stays within the last four weeks. There is a big difference between my local hospital and Mayo, including physician coverage. Please ask your doctor if they make hospital rounds and where. I already found another Neurologist to take over my local needs and will work with my MG doctor at Mayo. I feel it is extremely important to know you symptoms, previous test results and be able to communicate those to your physicians. My problem is getting the doctors to appreciate what you are telling them verses their exams and test results that do not always match what they are accustom too.
At my appointment next week with my MG doctor at Mayo I am going to ask her if it is possible for her to document a brief history of my MG, including my symptoms, test results and what any other doctor would need to know and understand about my case.
This has been a big setback for me and I still have not gotten my atrial fib corrected. But I am getting stronger and staying positive.
Bruce
Leading up to my crisis I had already received five days of IVIG but still progressively got worse. My MG doctor at Mayo wanted to admit me and try Plex. My wonder wife drove me six hours to Mayo in severe respiratory distress. Yes, we were taking a big risk verses going to my local hospital, but it was the right call. I use a Peek Flow meter to measure my respiratory capacity verses the breathing test, which I have done myself and done by doing numerous neuro exams, including after admissions at Mayo. What is important with any of this test is to know you normal basis line. My breathing tests are normally a count of 30 and my Peek flow is 300. I should also note that I have asthma and COPD.
Upon hospital admission with respiratory distress you will normally get blood gases and regular pulmonary function test called NIF (negative inspiratory force) and FVC (forced vital capacity). During my admission my blood gases and pulmonary test were all normal and stayed normal for the next day. That did not mean I felt normal, I knew I was getting weaker and having more distress. I was receiving Plex and on my second day during my Plex treatment I had the new I was close to respiratory arrest and told my wife I wanted to avoid intubation if all possible. That morning my NIF was normal but my FVC had dropped from been dropping from my high of 2.9 to 0.7. My neuro team knew I was in distress so the came to treatment area where I was receiving my Plex. I had just finished the treatment and the nurse had moved me to the wheelchair to get me to my room. The little effort to move was too much. I remember the neuro team coming in at that time, just as I blacked out.
The lessons I learned from this experience. Important to share your personal knowledge of just how severe your MG symptoms and breathing difficulties are because they do not always match what the test and doctors findings are on exam. My doctors were very alert the morning of my crisis however I often got some puzzled looks or replies during some of my exams, especially by my respiratory therapists when I would max out the NIF test every time.
After I was discharged from Mayo I was only home for one day before I had to go to my local hospital due to atrial fib. I was in the hospital a week and discharged still with atrial fib due to issues with my MG. I neurologist seeing me had any idea about MG. I learned my local neruo doctor locally had stopped making hospital rounds. I had still been having some MG symptoms and on my second day upon discharge I was again having severe respiratory distress. The ER doctor pretty much followed my lead as to my knowledge of MG and treatment. I was fortunate that he went ahead and gave a bolus of sodium medol, which made a big difference. Sodium Medol 1 gm for three days was my rescue treatment at Mayo.
During that admission I was admitted to ICU for MG issues but the doctors seemed very unsure if my symptoms were MG due to my exams and test. I even had the pulmonary doctor tell me I had a anxiety attack. The neurologist on call did not even see me until after 24 hours.
I know I was having alot of anxiety but feel it along with severe other factors triggered my MG. I know my MG symptoms and shortness of breath and know I was having MG issues that morning.
I have several lessons that I learned from my three hospital stays within the last four weeks. There is a big difference between my local hospital and Mayo, including physician coverage. Please ask your doctor if they make hospital rounds and where. I already found another Neurologist to take over my local needs and will work with my MG doctor at Mayo. I feel it is extremely important to know you symptoms, previous test results and be able to communicate those to your physicians. My problem is getting the doctors to appreciate what you are telling them verses their exams and test results that do not always match what they are accustom too.
At my appointment next week with my MG doctor at Mayo I am going to ask her if it is possible for her to document a brief history of my MG, including my symptoms, test results and what any other doctor would need to know and understand about my case.
This has been a big setback for me and I still have not gotten my atrial fib corrected. But I am getting stronger and staying positive.
Bruce
I am sorry that you are going through so much. Thanks for sharing. It's important that we take as much information to the ER because some of the medical team are not familiar with MG. I will pray that you are feeling better soon. God bless you. Cabbage7
He is an INTJ & healthcare exec so your writing was right up his ally, thx again Bruce!!! Will be praying you will continue to get stronger. Luv MeL