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...
This has not been fun! I was just diagnosed by blood test three weeks ago. I just had my cat scan yesterday, and my neuro called me yesterday and told me to hold off on changing anything because my cat scan came back showing abnormalities on my left breast and liver. It also confirmed a thymoma, which I sort of expected.
My husband and I spent the whole night praying and crying.
This morning I went straight for a mammogram which showed my breast to be fine! Praise God! One less thing to worry about. It also gives me hope that I might be normal in the liver too, and it was maybe just some weird cat scan flare or something.
I have to wait until tomorrow to talk to my GP about all of this and find the extent of the thymoma. My neuro said that they would take it out no matter what, but I'm hoping and praying that it is small enough to take out arthroscopic-ally.
In the mean time, I have been so short of breath and my neck feeling closed up and lumpy. The mestonin helps, but only for a few hours. My neuro is aware of it, an I have another appointment with him Thursday.
In the meantime work doesn't stop. I have been busy doing construction photography with deadlines. Almost done with this project and doing it in short spurts.
The ups and downs of this is really hard. The reality that this life is a gift and my body is really mortal set on suddenly yesterday. (always knew it, but it gets real, fast)
I can't imagine so many of you who have had to wait months/years for a diagnosis. Praying for you all.
Leslie
My husband and I spent the whole night praying and crying.
This morning I went straight for a mammogram which showed my breast to be fine! Praise God! One less thing to worry about. It also gives me hope that I might be normal in the liver too, and it was maybe just some weird cat scan flare or something.
I have to wait until tomorrow to talk to my GP about all of this and find the extent of the thymoma. My neuro said that they would take it out no matter what, but I'm hoping and praying that it is small enough to take out arthroscopic-ally.
In the mean time, I have been so short of breath and my neck feeling closed up and lumpy. The mestonin helps, but only for a few hours. My neuro is aware of it, an I have another appointment with him Thursday.
In the meantime work doesn't stop. I have been busy doing construction photography with deadlines. Almost done with this project and doing it in short spurts.
The ups and downs of this is really hard. The reality that this life is a gift and my body is really mortal set on suddenly yesterday. (always knew it, but it gets real, fast)
I can't imagine so many of you who have had to wait months/years for a diagnosis. Praying for you all.
Leslie
Dee
I hope your deadlines are met and you can cut back a bit on work until you feel much better. Here's hoping for resolution and your feeling better in the months ahead....Hugs, Marie
I met with my gp today and she said that the cat scan came up with a 3 cm thymoma and multiple lesions on my liver with concerns for malignancies. She actually used the c word. She said that these lesions look like they might be secondary. They have submitted a request to my insurance to get mris of my full abdomen looking for tumors asap.
We finally told our daughters and friends and family for prayer tonight. We are really dumb struck. And I am just so worried about my family. It has really occurred to me how much they need me. The idea of them grieving breaks my heart. I know I'm getting ahead of myself, but how do you not?
In the meantime it seems that no one wants to talk about my MG symptoms until we work this out. I feel awful. My breathing is tight, my throat feels like I have a rubber band around it, my neck hurts from weakness giving me headaches and my whole neck feels fluish. I'm sure the stress hasn't helped.
Seeing the neuro tomorrow.
Anyone else had to go through this?
Leslie
I'm so sorry for what you are going thru. Before I had mg,, a mass was found in my chest. At first it was thought to be lymphoma,, but a biopsy showed thymoma. It is now stage 4, but it is treatable and I am doing well.. I know all the things that are going thru your head, but try to take one day at a time Take the time tof find the very best thoracic surgeon you can find. These cancers are rare and you need a dr. that is experienced and knowledgeable with the latest.
Sending positive energy your way
My small group at church is doing a book on Bible study. I am the first person to give a devotion on the first chapter this Friday. My time preparing in the word this morning was so sweet. I am feeling blessed and stronger this morning, but of course, I always feel stronger in the morning.
XOXO
Thanks again.
Leslie
HappySeeker
Now we can get back to treating the MG. I have an appointment with my neuro to talk about IVIG and an appointment with a surgeon to get my thymus removed.
I'm keeping hope and praying that remission is around the corner.
Keep on keepin' on!
Leslie
Lisa