tiger Posted March 23, 2009 Report Share Posted March 23, 2009 Well it turns out I do not have myasthenia gravis, but doctors do not know why I am still having the bilateral facial droop, eye droop and slurred speech, trouble swallowing. Does anyone else have these problems? I still think it's related to my pots, the symptoms improve when I lay flat. Quote Link to comment Share on other sites More sharing options...
all4family Posted March 23, 2009 Report Share Posted March 23, 2009 Hi Sara,I get weak facial muscles when I am tired. I feel like I can't control them very well, though I don't have drooping. I also have slurred speach once again when I am tired (which is almost all the time!) I had a friend of my daughters once ask me if I wore a tounge ring! She was so impressed! I was devistated! I get a rapid moving of my tounge inside my mouth, and I can't control the pitch of my speech, and lose my voice frequently. Glad to hear you don't have MG! But sorry you don't have an answer to your problem! Quote Link to comment Share on other sites More sharing options...
cordila Posted March 23, 2009 Report Share Posted March 23, 2009 My boyfriend can always see a crash coming in my face before I feel the effects/symptoms. He said it's like my whole face droops. If I look in the mirror I can see what he's talking about - my eyelids sag and it's like my skin falls away from the bones and I look about 20 years older. Then, when the crash passes, I look totally normal again. I would be really interested to know what causes this. Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 24, 2009 Report Share Posted March 24, 2009 Well it turns out I do not have myasthenia gravis, but doctors do not know why I am still having the bilateral facial droop, eye droop and slurred speech, trouble swallowing. Does anyone else have these problems? I still think it's related to my pots, the symptoms improve when I lay flat.How was MG ruled out in your case, if you don't mind my asking? Quote Link to comment Share on other sites More sharing options...
tiger Posted March 25, 2009 Author Report Share Posted March 25, 2009 I have been tested for the antibodies several times and always negative, and also had a single fiber EMG and it was also negative. Mestinon doesn't really work for me either. Quote Link to comment Share on other sites More sharing options...
tiger Posted March 25, 2009 Author Report Share Posted March 25, 2009 Waterbaby- that is very interesting that you have that too. At the beginning mine was kind of mild and now is worse after having Pots for 3 yrs now. Does this happen to you daily? how bad is it? Quote Link to comment Share on other sites More sharing options...
Katja Posted March 25, 2009 Report Share Posted March 25, 2009 I have this, but the face muscle slackening is usually unilateral, for me (either side). I have no clue why this happens, at this point it's one of a long list of unexplained symptoms. Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 25, 2009 Report Share Posted March 25, 2009 Are you seeing a neurologist????? Please let me know. Miriam Quote Link to comment Share on other sites More sharing options...
Radha Posted March 26, 2009 Report Share Posted March 26, 2009 i get facial weakness, both sides when i have been chewing, not that much food, but after some chewing, then muscles get stiff and hard to move face, its scarey but with rest goes away but comes back next time i eat, radha Quote Link to comment Share on other sites More sharing options...
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