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...
We saw local Neuro this week, after setting up IVIG for Aug. 9th Cleveland Clinic ordered at our local infusion center. Well hubby was getting IVIG for Neuropathy, MG, and said it would help celiac 2.
Well she wants to change his meds to PYRIDOSGTIGTMINR 60MG 2x a day, and him to have his thymus gland removed(Which was not enlargted during his CT in March) and then Cellcept.
When she held his ankles and moved his feet, he had eyes closed and didnt feel it, but he can move on his own. Same with some parts of face and arms. She said PAIN isnt part of MG, and neither is edema or skin temp. changes.
His MG is not classic OCULAR, his is Generalized, and more in his calves, arms, and has vision blurriness, and even has lost vision for a minute here and there. He also has narrowing, but primarily its in his whole body. HE hasnt worked since August due to Chronic Pain and Fagtigue
What gto expect with this surgery, and medications. Have they worked and what did u go through?? Do we forget about IVIG???
Well she wants to change his meds to PYRIDOSGTIGTMINR 60MG 2x a day, and him to have his thymus gland removed(Which was not enlargted during his CT in March) and then Cellcept.
When she held his ankles and moved his feet, he had eyes closed and didnt feel it, but he can move on his own. Same with some parts of face and arms. She said PAIN isnt part of MG, and neither is edema or skin temp. changes.
His MG is not classic OCULAR, his is Generalized, and more in his calves, arms, and has vision blurriness, and even has lost vision for a minute here and there. He also has narrowing, but primarily its in his whole body. HE hasnt worked since August due to Chronic Pain and Fagtigue
What gto expect with this surgery, and medications. Have they worked and what did u go through?? Do we forget about IVIG???
Cathi
Cat- they said everything was normal on his CT with exception of minimal collapse of lowe lung lobes and a tumor 3cm in adrenal which seemed beign. So that why I wonder if he needs thymus remove. He bleeds so much doing surgery. They have cancelled his IVIG that Cleveland Clinic prescribed. How do they perform the surgery??
Cathi