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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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New Member
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Hello all members,
This group has been very helpful and informative. I appreciate everyone who spends their time in reading and responding with their knowledge and experiences. I was diagnosed with MG 10 weeks ago. Subsequently, CT scan confirmed Thymoma. 5 weeks ago, I was given IVIG treatment (not a pleasent experience due to some side effects). Effect of IVIG seem to be positive on MG symptoms. 4 weeks ago Thymus gland was removed which had grown in size. I was hoping that the removal of Thymoma will cure all MG symptomps. Unfortunately not. I started Mestinone 60mg 2 to 3 times a day. Currently I am taking 4.5 a day. My eye lids, my swallowing seems to be getting better. However, I loose my voice 2 hours after taking a tablet. I also feel very warm and need a fan after 4 hours of taking a tablet. Feel very weak and can't resume my normal activities as I get tired too quickly. I am starting to take Mestinone 60 mg every 4 hours to see if it helps. Few questions: Did any one have Thymoma and MG? Did Thymoma removal help? What is the maximum Number of Mestinone tablets you have taken? If Mestinone was not effective, did you try any other medicine? Thanks |
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