Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

 
 
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Old 01-13-2010, 04:42 PM #6
Joanmarie63 Joanmarie63 is offline
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Join Date: Mar 2009
Location: Western North Carolina
Posts: 468
15 yr Member
Joanmarie63 Joanmarie63 is offline
Member
 
Join Date: Mar 2009
Location: Western North Carolina
Posts: 468
15 yr Member
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When I first started with MG it was double vision and extreme weakness in my hands, arms and neck. I had just had a baby when it got really bad and I couldn't hold the baby bottle or hold a pen to write a check.

My thymus was spread throughout my chest like fatty tissue and the Dr said he "scraped" my organs to remove it but said he most likely didn't get it all.

My remission was great! No meds, no weakness, it was heaven!

Now I am out of remission and my double vision is back, arm weakness, hands, and now legs and lungs. My legs and lungs had never been weak before so that is new for me. My hands are not as severe as before, so that is good.

Only med I take is the mestinon and even then I only take it when my eyes are so bad I can't see or when my breathing starts getting worse. I have to take benadryl even with the mestinon because I break out in itchy bumps and my tongue swells a bit and my lungs seems to fill with fluid, have to keep coughing. But it is better than nothing, as I am super sensitive to medications.
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