Radha Posted January 4, 2009 Report Share Posted January 4, 2009 for those of you who have or know about myesthenia gravis, can you have this without any eye drooping or any eye problems at all? i dont have eye problems but the muscle weakness and swallowing and chewing problems, just thinking of this as a possibility, thanks for any infoRadha Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 4, 2009 Report Share Posted January 4, 2009 Radha,My neurologist says you can. I am having severe muscle weakness after exercise (3-4 repetitions, not after an hour or even 10 minutes) and one eye will not move inwards to focus. He has ordered the blood test for MG: acetylcholine receptor antibody. I also am going to a neuro-opthamologist in two weeks. I get the results of the blood work Monday. I will let you know if I find anything else out.From my reading, it could be MG or just plain POTS. Quote Link to comment Share on other sites More sharing options...
flop Posted January 4, 2009 Report Share Posted January 4, 2009 Like POTS I don't think there are ny hard and fast rules about myasthenia gravis. A similar but much rarer condition is Lambert-Eaton myasthenic syndrome (LEMS) might be worth doing a google for that too.Hope that whatever it is you get some relief soon,Flop Quote Link to comment Share on other sites More sharing options...
bjt22 Posted January 4, 2009 Report Share Posted January 4, 2009 This is something I've wondered about. I have pretty extreme muscle weakness, and my eyes have never moved properly....not since I was a child. I also have some trouble with swallowing and chewing. I wouldn't have given it much thought had I not started mestinon and noticed an improvement in muscle strength on even a relatively small dose. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 5, 2009 Report Share Posted January 5, 2009 I wish my doctor would let me try mestinon. I had eyelid lag when i first got POTS and all... Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 5, 2009 Report Share Posted January 5, 2009 Got my acetylcholine receptor antibody test results today:AChR-binding antibody 0.25 nmol/LAChR-blocking antibody 7%Reference Intervals * Negative: 0.00-0.24 nmol/L * Borderline: 0.25-0.40 nmol/L * Positive: >0.40 nmol/LThe neurologist said it "looked fine." Um, is it? I have antibodies, and it's not negative, but it's not high enough to be positive?But of course I also have three endocrinologists debating whether or not I have/will have Hashimoto's thyroiditis: I have an antibody titer that is well above normal for thyroglobulin, but my T3 and T4 are OK at the moment, but I have previous hypothyroidism...So much for science...I need another flower (for plucking petals) or maybe that magic 8 ball. I think I'll make tea tonight...anyone read tea-leaves? Quote Link to comment Share on other sites More sharing options...
Radha Posted January 6, 2009 Author Report Share Posted January 6, 2009 my eyes move fine, no drooping either, thats why i was hesitating to consider myesthenia gravis, thanks for all your replies,Radha Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 6, 2009 Report Share Posted January 6, 2009 my eyes move fine, no drooping either, thats why i was hesitating to consider myesthenia gravis, thanks for all your replies,RadhaMy eyes aren't droopy, but one eye will not move inward to focus anymore (and I KNOW it used to.) What is your fatigue like? All over, weakness in your arms and legs? How about repetitive motion? Can you do two or three repetitions of something (raising a leg) and then just not be able to?(Classic MG)Have you had an esophageal motility study done? Sometimes it's a GI thing. There are many things that can cause the chewing/swallowing thing!Get the blood tests, it will show more (at least maybe in your case) I'll let you know what the neuro-opthamologist says about it.Jennifer Quote Link to comment Share on other sites More sharing options...
futurehope Posted January 6, 2009 Report Share Posted January 6, 2009 For those who are interested, here is a forum from which I learned some things. It is an MG form within "Braintalk Communities".http://brain.hastypastry.net/forums/forumdisplay.php?f=197 Quote Link to comment Share on other sites More sharing options...
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