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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-14-2019, 02:58 PM | #1 | ||
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Newly Joined
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Hi All - New to the forum although I've had MG for just over 2 years. I'm a 37 y/o male that was diagnosed back in November 2016 after my wife noticed my left eye was droopy. After meeting with my neurologist and having a CT Scan, it was determined I had an enlarged thymus (unclear at the time whether it was a thymoma). In April 2017, I had a thymectomy, which went very smoothly and my symptoms seemed to subside.
Unfortunately, about a week ago, I had my first flare up and it has had a dramatic effect on my voice. I have started to slur my speech after talking for a bit and when it's not slurred, my voice tone has a nasal quality to it. I have been on pyridostigmine (180-240mg/day) and my neurologist added prednisone as of last year (20mg/day that today was upped to 30mg/day). My question is has anyone had this happen with their voice and how did the situation (if it did) resolve itself? It's been a real frustration as it has become exhausting to speak ("r", "t", "s" and "j" sounds are a real challenge). Does prednisone typically work for these situations or will I need to try something else? Thanks for the support! |
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01-14-2019, 09:49 PM | #2 | |||
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Grand Magnate
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Hi mg2016
Welcome to NeuroTalk . I don't know much about MG but am sure that members who do will be able to offer you support and good ideas. Best wishes.
__________________
Knowledge is power. |
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01-15-2019, 03:02 PM | #3 | ||
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Member
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Dysarthria used to be a real problem for me, along with anything else that can go wrong above the neck! It did not resolve until I began using rituximab. Now all symptoms are very well controlled.
Be careful, because dysarthria's evil twin, dysphagia, often likes to play too, and that combo can really wreak havoc on your life. |
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02-16-2019, 09:48 PM | #4 | ||
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Junior Member
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Quote:
As for Predisone please try to wean off ASAP I was on for a little over a year and made me feel like a train ran over me, all kinds of inexplicable symptoms...I'm now on Mestinon 120mg every 3h 5 times a day + 180 SR at bedtime + 200mg Imuran/daily + IViG every 3 weeks and have been able to keep things under control. |
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02-20-2019, 06:24 PM | #5 | ||
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Junior Member
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This will probably come and go, as is typical for all the charicataristically unpredictable MG symptoms. Sing whenever you can. Otherwise, have fun immitating "Froggy" from the Little Rascals. Keep your doctor informed.
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