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...

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Got worse after my thymus gland was remove

cassynchris
cassynchris
After I had my surgery to remove my thymus gland and a tumor. About 2 weeks later I got worse. My speech got worse and mouth got really tired when I eat. I get really tired, the muscles in my right hand (fingers) want to stop working sometimes hard to type. I drop things sometimes. I am still out of work because of the surgery. I am so worried when I go back to work want be able to do it. I am on my feet running around for 8 hours. I cant go to the store with out coming home having to take a nap. I am on meds. Just started Predinsone about week and half ago. I am so get pain in my left leg the muscle hurts. I just dont know what to do. Please help.
catnap2
catnap2
Hi Cassy. When was your thymectomy? Mine was the end of August. I had plasmapheresis prior to surgery and it really decreased my symptoms. Surgery increased them and in the hospital they were severe, especially the swallowing. They slowly improved after surgery and I had about a month when things were pretty good. Now for the last month the symptoms have been increasing and I see my neuro next week to discuss treatments. Right now I am only on mestinon. Remember thymectomy is a long term treatment, not an instant fix. It's frustrating but it's very important to have patience with yourself.
I am also looking at returning to work in the next three weeks. My job is very active as well and I am nervous about tolerating it. I totally hear you on having to take a nap after completing one errand. That's not going to be an option when I return to work either.
Cathi
newmugg
newmugg
What was the pathology report on your thymoma (tumor)? It is important to ask for a copy of the pathology report. Look at the type and staging of your tumor (WHO type and Masoka staging)
I was told that after removal of the thymoma (tumor) that symptoms can get worse before they get better....simplistically, your body has memory cells that is causing your symptoms. Apparently MG caused from thymoma is a little different.
sherry from texas
cassynchris
cassynchris
Hi, I had my surgery in September . I also got back the report of my tumor. My biggest problem is talking. I get so mad sometimes I can't deal with sometimes I just won't talk anymore after that. Last night I had really bad pain in my left leg. I didn't sleep that good. I will be uping my predinsone from 15mg to 20mg. I also take Mention every 4 hours.