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 emailed my neurologist at Vanderbilt on Tuesday about possibly doing another pulmonary workup at Vanderbilt because of my continued breathing difficulties. I have a good local pulmonologist, but there is value in having all tests and doctors at the same facility. He agreed. I contacted the Pulmonology department and they were able to see me yesterday (Wednesday, October 12, 2011).
My appointment was at 8:20 AM Nashville time. We (Cathy and myself) left at 5:15 AM (Georgia time) because of the heavy fog and possibility of heavy traffic. The fog was not a problem until we crossed Monteagle. We arrived in Nashville about 6:30 AM (Nashville time) and ate breakfast at the Pancake Pantry. We made it home about 6:30 PM (Georgia time).
I had a good and thorough exam and the doctor(s) took lots of time to ask questions, listen to me and my wife, and explained what he thought was happening. They were able to work me in for lots of tests while I was there--and I do mean lots of testing.
The Results!
(1) There is no evidence of lung disease! My lungs are clear. No sign of cancer, COPD, etc. This is good news and helps clarify what is happening to me.
(2) The values of the Pulmonary Function Testing were worse than they were in November and December of 2010 when first tested at Vanderbilt. Even taking into account all of the treatments I have had since then, my condition continues to slowly decline.
(3) My diaphragm continues to be at about 40% of normal strength. This is why my breathing is so difficult. My respiratory muscles are not working correctly making inhaling and exhaling hard. My inhaling is better than my exhaling. According to my test result, I have less exhale force than an 80 year old woman. So, its harder to get the old air out to get the new air in. To compensate for the poorer air exchange, I breathe very hard and my pulse rate goes between 120 to 150.
(4) My main diagnoses consists of two conditions: Myasthenia Gravis, Small Fiber Neuropathy. Each of these can cause breathing issues and effect the respiratory muscles in different ways. My breathing problem could be caused by either or both.
What's Next?
I continue the Cytoxan infusions in order to lower my immune system. Since both my Myasthenia Gravis and Small Fiber Neuropathy are autoimmune related, lowering my immune system should reduce the symptoms and allow time for my body to heal. The amount of healing depends on the amount of damage.
I meet with my neurologist in November and we plan to discuss some nerve studies on my respiratory muscles.
Right now I am not in immediate danger or respiratory distress (except for a serious infection). The primary focus is stopping the progression of these diseases. The secondary focus is "what will we do if we can't stop the progress?" We shall see. Until then, I am learning to live with limitations.
My appointment was at 8:20 AM Nashville time. We (Cathy and myself) left at 5:15 AM (Georgia time) because of the heavy fog and possibility of heavy traffic. The fog was not a problem until we crossed Monteagle. We arrived in Nashville about 6:30 AM (Nashville time) and ate breakfast at the Pancake Pantry. We made it home about 6:30 PM (Georgia time).
I had a good and thorough exam and the doctor(s) took lots of time to ask questions, listen to me and my wife, and explained what he thought was happening. They were able to work me in for lots of tests while I was there--and I do mean lots of testing.
The Results!
(1) There is no evidence of lung disease! My lungs are clear. No sign of cancer, COPD, etc. This is good news and helps clarify what is happening to me.
(2) The values of the Pulmonary Function Testing were worse than they were in November and December of 2010 when first tested at Vanderbilt. Even taking into account all of the treatments I have had since then, my condition continues to slowly decline.
(3) My diaphragm continues to be at about 40% of normal strength. This is why my breathing is so difficult. My respiratory muscles are not working correctly making inhaling and exhaling hard. My inhaling is better than my exhaling. According to my test result, I have less exhale force than an 80 year old woman. So, its harder to get the old air out to get the new air in. To compensate for the poorer air exchange, I breathe very hard and my pulse rate goes between 120 to 150.
(4) My main diagnoses consists of two conditions: Myasthenia Gravis, Small Fiber Neuropathy. Each of these can cause breathing issues and effect the respiratory muscles in different ways. My breathing problem could be caused by either or both.
What's Next?
I continue the Cytoxan infusions in order to lower my immune system. Since both my Myasthenia Gravis and Small Fiber Neuropathy are autoimmune related, lowering my immune system should reduce the symptoms and allow time for my body to heal. The amount of healing depends on the amount of damage.
I meet with my neurologist in November and we plan to discuss some nerve studies on my respiratory muscles.
Right now I am not in immediate danger or respiratory distress (except for a serious infection). The primary focus is stopping the progression of these diseases. The secondary focus is "what will we do if we can't stop the progress?" We shall see. Until then, I am learning to live with limitations.
I so hope you get some beneift from your treatments soon. Not breathing well is exhausting and frightening. I wish you all the best. Keep us informed.
J
I did find walking to the corner did help when I had breathing issues and sometimes have as tapering off predisone.
Sometimes I refuse,
but the wierd part was when I was walking a steady walk to the corner store, I was better. Always hard to know , aM I walking because I am better or better because I am walking?.
I am sorry you are having breathing issues. It is difficult even to feel breathing, cause it is scary.
Ann