5 ms·

I wish I could say my dad's thymus is saving his life, quite the opposite. He was discharged from the ICU/hospital yesterday after he nearly died from a "myasth

by xixo 3y ago

I wish I could say my dad's thymus is saving his life, quite the opposite. He was discharged from the ICU/hospital yesterday after he nearly died from a "myasthenic crisis"—an event that most people with Myasthenia Gravis (MG) will experience. From what I understand, his thymus produces antibodies that destroys receptors connecting the nerves and muscles. He can't keep his head up, eyelids up, can't swallow and during the crisis could not breathe. Interestingly, a small portion of MG patients have an enlarged/tumorous thymus and end up getting it removed, though there aren't necessarily clear benefits. It's also a quite invasive procedure they wouldn't perform on older folks like my dad (he shows no signs of it anyway). Overall I agree with you though—this article is not saying anything new. As a concerned son who's spent more than his fair share of time trying to understand what's going on here, I wish it did. I also wish there were some treatments for my dad that worked. For now, exercising, eating healthy, lowering stress, and a healthy dose of steroids are currently keeping him with us. If anyone has advice, I'm all ears.

deleted 3y ago
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dan000892 3y ago
My mother was diagnosed with MG 25 years ago. Her first symptoms were droopy eyelid and double vision. Plasmapheresis helped, Prednisone had nasty side effects (glad to hear that sounds not to be the case for your father), prismatic glasses to un-double her vision kind of helped? As her symptoms increased—-speech delay, difficulty swallowing, eye misalignment, all stemming from fatigue-induced nerve conduction delays which can culminate in respiratory failure—-myasthenic crisis, they opted for thymectomy (open surgery). She was probably 50 and while the recovery was lengthy, it drastically improved her symptoms and the amount of activity she could do before arose symptoms appeared. No more prism glasses or multi-second speech delays, or weekly plasmapheresis visits. If she spent too much time being active or driving on a sunny day (squinting), she’d feel the ocular fatigue first and know she had to rest or take a prednisone. Now her eyes are failing for other reasons but the thymectomy bought her 25 years and counting. I’m glad your father survived his crisis. It sounds like you’re doing all of the conservative treatments (which is good; steroid noncompliance is a risk factor for crisis). There are new medications that directly reduce or deactivate AChR antibodies. Non-invasive video-assisted thoracoscopic thymectomy is more viable today too (and thymectomy has been shown to decrease the frequency and severity of crises even where the thymus was considered normal). Plasmapheresis remains generally effective, if time consuming. MG sucks. From one son to another, I hope you can get a few more good decades with your parent too.

by xixo 3y ago

deleted 3y ago

[deleted]

dan000892 3y ago

My mother was diagnosed with MG 25 years ago. Her first symptoms were droopy eyelid and double vision. Plasmapheresis helped, Prednisone had nasty side effects (glad to hear that sounds not to be the case for your father), prismatic glasses to un-double her vision kind of helped? As her symptoms increased—-speech delay, difficulty swallowing, eye misalignment, all stemming from fatigue-induced nerve conduction delays which can culminate in respiratory failure—-myasthenic crisis, they opted for thymectomy (open surgery). She was probably 50 and while the recovery was lengthy, it drastically improved her symptoms and the amount of activity she could do before arose symptoms appeared. No more prism glasses or multi-second speech delays, or weekly plasmapheresis visits. If she spent too much time being active or driving on a sunny day (squinting), she’d feel the ocular fatigue first and know she had to rest or take a prednisone. Now her eyes are failing for other reasons but the thymectomy bought her 25 years and counting. I’m glad your father survived his crisis. It sounds like you’re doing all of the conservative treatments (which is good; steroid noncompliance is a risk factor for crisis). There are new medications that directly reduce or deactivate AChR antibodies. Non-invasive video-assisted thoracoscopic thymectomy is more viable today too (and thymectomy has been shown to decrease the frequency and severity of crises even where the thymus was considered normal). Plasmapheresis remains generally effective, if time consuming. MG sucks. From one son to another, I hope you can get a few more good decades with your parent too.