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...
Here is an update of my recent medical appointments.
Neurology
I had my regular neurology appointment on Wednesday, July 25. I saw Dr. Lee and Dr. Clark. Dr. Clark is beginning his neurology fellowship. As always, they took plenty of time with me and did a thorough evaluation. This August begin my fourth year under Dr. Lee's care at Vanderbilt.
So, where do things stand at present?
We know for sure that I have Myasthenia Gravis (MG) and Neuropathy. The type of neuropathy I have does not respond much to treatments, so the emphasis has been on the MG.
I have had all the "big gun" treatments for MG, except "autologous stem cell transplant." A stem cell transplant is a totally different set of problems in itself (the treatment can kill you) and provides no guarantee of help in my condition anyway--so its not an option at present. The goal of all of my treatments has been to control the autoimmune response by modifying and reducing my immune system.
Dr. Lee now talks about managing the "trajectory" of my MG. Since I developed MG, I have been on a downward trajectory and sometimes the trajectory was very steep. Over all the various treatments over the past three years slowed the trajectory some, but I always went down-hill again. The goal has been to stop the downward progression.
After the last plasma exchange in April 2012, I was given two rounds of Rituximab chemotherapy. The Rituximab completely destroys the B-Cells in my immune systems. The other medications I am on already keep the T-Cells in my immune system reduced.
Since taking the Rituximab, the trajectory of my MG has plateaued. Right now I am not getting any worse or better--I am about the same. In a recent email, Dr. Lee wrote, "You are holding your own, but just barely." Believe it or not--this is great news! For the first time in three years I am not getting worse.
In October, I will have more blood work to see if my B-Cells are returning. If they are I will probably have more Rituximab chemotherapy.
Sleep Study
I also met with Dr. Upender at the Vanderbilt Sleep Clinic on Thursday, July 27. I have used a Bi-PAP machine for some time now, but Dr. Lee wanted me evaluated at Vanderbilt to review my sleep issues. Cathy and I were pleased with Dr. Upender. We arrived at the Hyatt in Franklin, TN for the sleep study at 7:00 PM. We had a full day to kill between appointments on Wednesday and Thursday. Have you ever tried to do nothing for twenty-four hours because it is too hot to do anything--we were exhausted.
For the first three hours of the study, I did not use a Bi-PAP. I did not sleep well and it was a long, miserable three hours. They finally hooked me up to a machine and began adjusting pressure. About 4:00 AM they seemed to get the pressure adjusted correctly for me and I finally went to sleep only to be awoken at 5:30 AM when the study was complete. We slept well when we arrived home on Friday.
I do not have the full report from the sleep study yet, but the pressure on my Bi-PAP was increased slightly. I was also changed from a nasal pillow mask to a hybrid face mask for more effective treatment.
Gastrology
My gastrologist scheduled several tests concerning my nausea. The Gastric Emptying study showed that my stomach muscles are not working correctly to empty my stomach. That is why is am nauseated. Now my stomach and respiratory muscles are both effected by Myasthenia Gravis. So now I go on a low-fiber, low-density diet. Yummy!
The Barium Swallow and CT Scan were all fine. The CT did show that I have a fatty liver. But that is no surprise since I have a fat "everything."
Summary
We are thankful that I am not worsening--this is a real blessing from the Lord. We are thankful for our friends and family and the support we receive from them. We are thankful for your continued prayers.
Neurology
I had my regular neurology appointment on Wednesday, July 25. I saw Dr. Lee and Dr. Clark. Dr. Clark is beginning his neurology fellowship. As always, they took plenty of time with me and did a thorough evaluation. This August begin my fourth year under Dr. Lee's care at Vanderbilt.
So, where do things stand at present?
We know for sure that I have Myasthenia Gravis (MG) and Neuropathy. The type of neuropathy I have does not respond much to treatments, so the emphasis has been on the MG.
I have had all the "big gun" treatments for MG, except "autologous stem cell transplant." A stem cell transplant is a totally different set of problems in itself (the treatment can kill you) and provides no guarantee of help in my condition anyway--so its not an option at present. The goal of all of my treatments has been to control the autoimmune response by modifying and reducing my immune system.
Dr. Lee now talks about managing the "trajectory" of my MG. Since I developed MG, I have been on a downward trajectory and sometimes the trajectory was very steep. Over all the various treatments over the past three years slowed the trajectory some, but I always went down-hill again. The goal has been to stop the downward progression.
After the last plasma exchange in April 2012, I was given two rounds of Rituximab chemotherapy. The Rituximab completely destroys the B-Cells in my immune systems. The other medications I am on already keep the T-Cells in my immune system reduced.
Since taking the Rituximab, the trajectory of my MG has plateaued. Right now I am not getting any worse or better--I am about the same. In a recent email, Dr. Lee wrote, "You are holding your own, but just barely." Believe it or not--this is great news! For the first time in three years I am not getting worse.
In October, I will have more blood work to see if my B-Cells are returning. If they are I will probably have more Rituximab chemotherapy.
Sleep Study
I also met with Dr. Upender at the Vanderbilt Sleep Clinic on Thursday, July 27. I have used a Bi-PAP machine for some time now, but Dr. Lee wanted me evaluated at Vanderbilt to review my sleep issues. Cathy and I were pleased with Dr. Upender. We arrived at the Hyatt in Franklin, TN for the sleep study at 7:00 PM. We had a full day to kill between appointments on Wednesday and Thursday. Have you ever tried to do nothing for twenty-four hours because it is too hot to do anything--we were exhausted.
For the first three hours of the study, I did not use a Bi-PAP. I did not sleep well and it was a long, miserable three hours. They finally hooked me up to a machine and began adjusting pressure. About 4:00 AM they seemed to get the pressure adjusted correctly for me and I finally went to sleep only to be awoken at 5:30 AM when the study was complete. We slept well when we arrived home on Friday.
I do not have the full report from the sleep study yet, but the pressure on my Bi-PAP was increased slightly. I was also changed from a nasal pillow mask to a hybrid face mask for more effective treatment.
Gastrology
My gastrologist scheduled several tests concerning my nausea. The Gastric Emptying study showed that my stomach muscles are not working correctly to empty my stomach. That is why is am nauseated. Now my stomach and respiratory muscles are both effected by Myasthenia Gravis. So now I go on a low-fiber, low-density diet. Yummy!
The Barium Swallow and CT Scan were all fine. The CT did show that I have a fatty liver. But that is no surprise since I have a fat "everything."
Summary
We are thankful that I am not worsening--this is a real blessing from the Lord. We are thankful for our friends and family and the support we receive from them. We are thankful for your continued prayers.
It is wonderful to hear that you are getting stabilized!!! You are continuously in my thoughts and prayers and I have been heartened by seeing you posting more recently. I was hoping that was a good sign.
I have been praying for mercy for you... that you might have some relief. You were my first MG contact and you hold a special place in my heart. I hope you and Cathy will be able to enjoy some simple pleasures now that you are stabilizing.
My favorite MG scripture (that I sent you the first time I wrote you):
Isaiah 40:31 (KJV)
"But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint."
Rosie... still holding you up
So good to hear the update from you and that you are at least stable and that is always a good thing.
Also, holding you up in prayer.
hugs,
Annette
Cathi
Rosie, what an excellent MG Bible verse, I love it!
Rosie
Glad you are holding your own, however hoping you will start showing improvement soon.
Thank you mentioning your experience with rituximab. My doctor has mentioned she may consider rituximab if my conditions doesn't show improvement.
Looking forward to meeting you in Atlanta if your are able to make the MG conference.
Bruce
Marcela